rilsam
01-02-2007, 10:21 PM
Our thread was getting a little long in the tooth. I keep say when my dog dies (hopefully not soon but she's 15y/o) I want a big dog I can train as a working dog for stability and picking up things. My childrens' piano teacher has two huge dogs that I just love.
My ring in of the new year was peaceful. Just my husband and me cuddling. I couldn't ask for anything better. I'd be too tired to go out and celebrate. I hope yours was good.
Sorry to hear about your muscles. That was the exact same thing that happened to me before I started on the klonopin. The zanaflex made it so much worse. I never did find anything to relieve the pain and discomfort until the klonopin. And I did exactly what you did : stretched, epson salt, hot baths. Massages don't work either. Does your doc have any idea?
I'm glad to be home. I can't believe the amount of homework my kids had. I did one part for my 9 y/o. 2 1/2 hours of homework is not exceptable to me at that age. For goodness sakes it's only elementary.
My ring in of the new year was peaceful. Just my husband and me cuddling. I couldn't ask for anything better. I'd be too tired to go out and celebrate. I hope yours was good.
Sorry to hear about your muscles. That was the exact same thing that happened to me before I started on the klonopin. The zanaflex made it so much worse. I never did find anything to relieve the pain and discomfort until the klonopin. And I did exactly what you did : stretched, epson salt, hot baths. Massages don't work either. Does your doc have any idea?
I'm glad to be home. I can't believe the amount of homework my kids had. I did one part for my 9 y/o. 2 1/2 hours of homework is not exceptable to me at that age. For goodness sakes it's only elementary.
Sponsor
duttin
01-02-2007, 11:05 PM
Glad your News Years was a good one.
I love my over sized dog,she's not the smartest thing and sleeps through everything,but always at my side.She's so spoiled she has to lay in the bath room when I take a bath.
I have so much pain its unreal.I'm at a point I can't handle it.i've been in tears for 2 days.I'm gonna call my neuro tomorrow.I've had strange headaches which is rare for me,my hearing is fading in and out.i have an annoying buzzing in my hip.If they could numb me from the waste down I'd be okay.The pain has been so bad keeping food down hasn't been easy.Then add the fatigue,I'm wiped.
Thats 2 much home work!
I love my over sized dog,she's not the smartest thing and sleeps through everything,but always at my side.She's so spoiled she has to lay in the bath room when I take a bath.
I have so much pain its unreal.I'm at a point I can't handle it.i've been in tears for 2 days.I'm gonna call my neuro tomorrow.I've had strange headaches which is rare for me,my hearing is fading in and out.i have an annoying buzzing in my hip.If they could numb me from the waste down I'd be okay.The pain has been so bad keeping food down hasn't been easy.Then add the fatigue,I'm wiped.
Thats 2 much home work!
rilsam
01-03-2007, 03:11 PM
Well what did your neuro say. It sounds like to much pain for a little body. I wonder if the cold weather is effecting you. I've started taking my klonopin 2 - 3 times a day now to keep the pain down. But it just seemed to have gotton worse with this wacky weather.
My prayers are with you. Cry when you need to. I always think it helps relieve stress. But try to be positive and hope tomorrow will be better.
My prayers are with you. Cry when you need to. I always think it helps relieve stress. But try to be positive and hope tomorrow will be better.
duttin
01-04-2007, 10:15 PM
I called my neuro he has doubled up my meds.Well thats fine for about 3 hours.I'm to call him back tomorrow.Steroids need to be started to stop the imflamation in the muscles.
Yesterday was hectic,hubby's father had a mild heart attack,my hubby's car broke down(needs a new starter)then I backed into my daughters friends car and damaged it.Good thing I'm on the valium,or I could of been a real basket case.
The damp weather don't help me either.
I feel like a drugged zombie,I have not done a whole lot around the house,I'm in lala land because of the meds.
Seen a chiropractor today for a consult,he won't adjust me do to the rods in my back.but thinks that mild traction may stretch the muscles to slow down the spasms.He gives me no guarentees,but willing to treat me for free until I notice some improvement.He ask what my goals were and I told him releif with the spacticity and to get the right leg manageable.he was very upfront and said the rt leg damage may be permanant,but he'll try.The rt foot numbness will never reverse beings its been that way for 8 or 9 years.He maybe able to provide some relief to the lumbar radiculopathy(nerve damage outside the spinal canal) but some residual damage will remain.
He won't proceed with any therapy until he speaks with my GP
I walked 2 blocks to the chiro appointment,hubby had my truck.Boy did people stare,yes I walk funny,there heads spun like the exercist.By the time I got there the right leg was a dragging but I made it.If I can make there heads spin with a half leg brace wait until I get the full one.
Yesterday was hectic,hubby's father had a mild heart attack,my hubby's car broke down(needs a new starter)then I backed into my daughters friends car and damaged it.Good thing I'm on the valium,or I could of been a real basket case.
The damp weather don't help me either.
I feel like a drugged zombie,I have not done a whole lot around the house,I'm in lala land because of the meds.
Seen a chiropractor today for a consult,he won't adjust me do to the rods in my back.but thinks that mild traction may stretch the muscles to slow down the spasms.He gives me no guarentees,but willing to treat me for free until I notice some improvement.He ask what my goals were and I told him releif with the spacticity and to get the right leg manageable.he was very upfront and said the rt leg damage may be permanant,but he'll try.The rt foot numbness will never reverse beings its been that way for 8 or 9 years.He maybe able to provide some relief to the lumbar radiculopathy(nerve damage outside the spinal canal) but some residual damage will remain.
He won't proceed with any therapy until he speaks with my GP
I walked 2 blocks to the chiro appointment,hubby had my truck.Boy did people stare,yes I walk funny,there heads spun like the exercist.By the time I got there the right leg was a dragging but I made it.If I can make there heads spin with a half leg brace wait until I get the full one.
rilsam
01-05-2007, 12:27 AM
I went to go walk at the YMCA today. I was getting set up on some simple weight machines with a worker. She wanted me to do the leg press at 110 lbs. I told her it was impossible. She was saying how I can do it. And legs are alot stronger than you think. This was after I told her I probably have MS. I wanted to hit her. I told her I might look healthy but my legs are shaky and I'm not going to even try. She relented. Then she was telling me about a member who has MS and doesn't even use a can. I told her that I have to use mine sometimes. Again she was floored. What an IDIOT! The only good thing that came of it is I'm now set up on a treadmill that will adjust to keep my heart rate in a preset range.
Before Xmas I was backing out of the garage with my husbands car because my battery was dead. I turned out to soon and hit the corner of the garage and put a dent in his fender and made his light dangle. That's what he gets for making me drive the girls to dance in his care. I did cry the whole way there and back because I felt so bad. Valium would have been a good thing.
Good for you walking. You should wave to the people that stare. They won't know what to make of that. Be careful of the chiro. I know they can help but they can also make things so much worse. But stretching you out would be a good thing.
This weather is killing me. My arm, legs, and chest feel like I have chains rapped around them. And I'm back to not sleeping. Life is so much better when you sleep.
I hope your father in law is doing ok. Maybe he'll take it as a warning to improve his health.
Before Xmas I was backing out of the garage with my husbands car because my battery was dead. I turned out to soon and hit the corner of the garage and put a dent in his fender and made his light dangle. That's what he gets for making me drive the girls to dance in his care. I did cry the whole way there and back because I felt so bad. Valium would have been a good thing.
Good for you walking. You should wave to the people that stare. They won't know what to make of that. Be careful of the chiro. I know they can help but they can also make things so much worse. But stretching you out would be a good thing.
This weather is killing me. My arm, legs, and chest feel like I have chains rapped around them. And I'm back to not sleeping. Life is so much better when you sleep.
I hope your father in law is doing ok. Maybe he'll take it as a warning to improve his health.
duttin
01-06-2007, 03:16 AM
My father in law is doing well and back home resting,he's in very good health and eats properly.Just goes to show even the healthiest sympyoms have there flaws.
Some people need to learn that MS effects all differently,hell I wear leg braces,but my friend that has MS doesn't.Don't ever do more than you can handle to pacify some idiot.
This chiro is young,well knowledgeable about MS and makes no promises if he can help.We discussed diets and all that and he said whole natural foods are the best,apples ,oranges raw veggies.He said meat is good we all need it,he stated that people way over cook there meats,and then they lose there enzymes that are nerves and muscles need.He said cook it until the juices are clear and not to where it looks like shoe leather.he stated liver is great in building back muscles.
At this point anything is worth a try.and I do like liver if its prepared right.
Its raining hear again 2 inches in a few hours and the city sewer lines backed up and I literally had crap in my bath tubs.They just put in a state of the art system right down our road,well they need to work out the kinks.I went and found my x-hubby who works for the village and he's gonna come back and suck all our lines out tomorrow and told me he would submit a clean up bill to the village adminastrater.He knows I have MS and said if it backed up to bad
he'd come and clean up the mess for me.which was nice of him.So,I get to sit up and keep a watch on that.I'm so tired of the rain,we ly in a flood plain so keeping an I on the raising water,we have never been flooded yet,but with all the past rain the ground is so wet theres no place for it to go.Everything is to crest by noon tomorrow.
I've been sleeping really well at night with the valium,it has helped some.But today I stacked a cord and a half of wood,before the rain started.I guess some days I'm my worst enemy.
Some people need to learn that MS effects all differently,hell I wear leg braces,but my friend that has MS doesn't.Don't ever do more than you can handle to pacify some idiot.
This chiro is young,well knowledgeable about MS and makes no promises if he can help.We discussed diets and all that and he said whole natural foods are the best,apples ,oranges raw veggies.He said meat is good we all need it,he stated that people way over cook there meats,and then they lose there enzymes that are nerves and muscles need.He said cook it until the juices are clear and not to where it looks like shoe leather.he stated liver is great in building back muscles.
At this point anything is worth a try.and I do like liver if its prepared right.
Its raining hear again 2 inches in a few hours and the city sewer lines backed up and I literally had crap in my bath tubs.They just put in a state of the art system right down our road,well they need to work out the kinks.I went and found my x-hubby who works for the village and he's gonna come back and suck all our lines out tomorrow and told me he would submit a clean up bill to the village adminastrater.He knows I have MS and said if it backed up to bad
he'd come and clean up the mess for me.which was nice of him.So,I get to sit up and keep a watch on that.I'm so tired of the rain,we ly in a flood plain so keeping an I on the raising water,we have never been flooded yet,but with all the past rain the ground is so wet theres no place for it to go.Everything is to crest by noon tomorrow.
I've been sleeping really well at night with the valium,it has helped some.But today I stacked a cord and a half of wood,before the rain started.I guess some days I'm my worst enemy.
rilsam
01-07-2007, 11:28 AM
It's good that your on good terms with your x-hubby. I haven't talked to mine in about 8 years. He always seems at his happiest if something bad is going on with me. He was a very verbally abusive man which turned physical the day I told him I was leaving. The best decision I ever made.
The last two days have been pretty bad for me. I don't think it was the exercise because I've taken it at a fairly even pace. The most I've done is walk but not enough to build up a sweat or become too tired. I just think my meds have decided to stop working. I'm one giant spasm. I can only sit for about 30 min before my lower back pain brings me to tears. I feel like I have chains around my ankles, wrists, and chest. And then to top it off my car needs to go into the shop tomorrow because it's making funny noises. I called my doc Friday and of course no call back. I'll try again first thing in the morning.
My husband is going to look on the internet for accupuncture and hypnosis therapy with MS. I think he finally realizes how much pain I can be under since I felt good with the klonopin for awhile. He's been good at taking care of me for the last two days. I also fell about four steps down the stairs. I'm good at landing on my butt. I don't know how I did it. I was watching were I was stepping and holding on to the rail. I just got a rug burn and a little more sore.
I've taken the klonopin (smallest dose .5mg) with flexeral, which I cut and took 1/4 th and it truly put me under the table. My husband had to practically carry me up the stairs. It did make me feel better. But it's easy to feel better when you're practically in a coma. lol. He wants me to do it again today so I can get some relief even if I sleep the day away. I just don't know. I hate being the incompasitated.
The last two days have been pretty bad for me. I don't think it was the exercise because I've taken it at a fairly even pace. The most I've done is walk but not enough to build up a sweat or become too tired. I just think my meds have decided to stop working. I'm one giant spasm. I can only sit for about 30 min before my lower back pain brings me to tears. I feel like I have chains around my ankles, wrists, and chest. And then to top it off my car needs to go into the shop tomorrow because it's making funny noises. I called my doc Friday and of course no call back. I'll try again first thing in the morning.
My husband is going to look on the internet for accupuncture and hypnosis therapy with MS. I think he finally realizes how much pain I can be under since I felt good with the klonopin for awhile. He's been good at taking care of me for the last two days. I also fell about four steps down the stairs. I'm good at landing on my butt. I don't know how I did it. I was watching were I was stepping and holding on to the rail. I just got a rug burn and a little more sore.
I've taken the klonopin (smallest dose .5mg) with flexeral, which I cut and took 1/4 th and it truly put me under the table. My husband had to practically carry me up the stairs. It did make me feel better. But it's easy to feel better when you're practically in a coma. lol. He wants me to do it again today so I can get some relief even if I sleep the day away. I just don't know. I hate being the incompasitated.
duttin
01-07-2007, 11:47 AM
MY x and I have stayed on fairly good terms for our daughter.My hubby gets along with him also so that helps.
I have slept for 2 days.I slept my birthday away.I have lost the central vision in both eyes.Puts a new meaning to looking around things.
Becareful of them stairs,they can be a wirse nightmares.I'll check in on you later vision is fading in and out,and I am so tired.Back to bed I go.
I have slept for 2 days.I slept my birthday away.I have lost the central vision in both eyes.Puts a new meaning to looking around things.
Becareful of them stairs,they can be a wirse nightmares.I'll check in on you later vision is fading in and out,and I am so tired.Back to bed I go.
rilsam
01-07-2007, 02:55 PM
Happy late birthday. Mine's next month. What a sucky way to have to spend it. It puts a new perspective on my complaints. I hope you can see the middle of things soon.
duttin
01-07-2007, 10:37 PM
Its not been a good day,i have slept more the last 3 days than I have in 2 weeks,averaging about 18 hrs of sleep,pain is back with evengences.Neuro will be called first thing in the morning.
NathanMc
01-07-2007, 10:50 PM
Bugger.
Get better eh nuffo?
Get better eh nuffo?
rilsam
01-08-2007, 11:29 PM
The pains been pretty bad here too. I called the doc Friday, no return. I called her this morning, no return. I paged her this evening and her nurse answered. She told me she's given the messages and doesn't know why she hasn't called. I was in tears on the phone because I just don't know what to do. To get pain relief I take meds but sleep the day away. When I'm awake I'm in pain. I think it's time for a new doc who will call back.
Half time and the Bucks don't look good. They need to be slapped around a bit if they're going to come back.
Half time and the Bucks don't look good. They need to be slapped around a bit if they're going to come back.
duttin
01-09-2007, 12:02 AM
I had to leave the room my sons hoping the bucks lose,he was born in michigan so he's a die heart michigan fan.This game sucks.i was to call my neuro yoday but doubled up on meds and got the house and bills inorder,so if he wants me as an in patient for the steroids everything is done at least for now.plus we were down to one car but the other one is fixed now.
MS society called getting everything worked out for the rebif,some med company called and they didn't except my insurance,so I told them to call my local pharmacy,its a 3 minute drive for me to pick it up.I think I'm to call the rebif people tomorrow,they don't speak up and I have hearing loss so I think I only hear half the conversation.I've been suffering about of vertigo again.But I have committed myself to call my neuro first thing in the morning.
The bucks best step up and play ball.At least the seahawks won last night by the skin of the butts.
Call your GP for help with pain meds,no need to suffer.
MS society called getting everything worked out for the rebif,some med company called and they didn't except my insurance,so I told them to call my local pharmacy,its a 3 minute drive for me to pick it up.I think I'm to call the rebif people tomorrow,they don't speak up and I have hearing loss so I think I only hear half the conversation.I've been suffering about of vertigo again.But I have committed myself to call my neuro first thing in the morning.
The bucks best step up and play ball.At least the seahawks won last night by the skin of the butts.
Call your GP for help with pain meds,no need to suffer.
rilsam
01-09-2007, 12:34 PM
I can't believe how bad the Bucks played! We went to bed early because we just couldn't stand it any more. For you son; according to my husband anyone who is a fan with any team in the big 10 teams should always cheer for the conference or they truly aren't fans. I don't agree.
My GP is out of the office today but I left a message. The reception told me to call after 12 if my neuro hasn't called and she'll give the message to another doc since they have access to each other charts. She doesn't want to see me in pain if I can be helped. The neuro nurse called back and said that my neuro won't be in the office till noon but she'll hit her up as soon as she gets in. I guess if I don't get a call be 2:00 I'll call the GP office.
For some reason my med isn't working. When I take it, it puts me to sleep for a few hours but I wake up in pain and with tremors. It just sucks!
I hope you can get started on Rebif soon and it works for you. I think it's kind of nerve racking waiting and seeing if the drug works or you have to start over on a new med.
I was without a car yesterday. At least it was just my antenna that was making the noise, but I have to get my belts replaced soon so they don't cause me any problems. My car may be old (10 y/o) but I still love it.
My GP is out of the office today but I left a message. The reception told me to call after 12 if my neuro hasn't called and she'll give the message to another doc since they have access to each other charts. She doesn't want to see me in pain if I can be helped. The neuro nurse called back and said that my neuro won't be in the office till noon but she'll hit her up as soon as she gets in. I guess if I don't get a call be 2:00 I'll call the GP office.
For some reason my med isn't working. When I take it, it puts me to sleep for a few hours but I wake up in pain and with tremors. It just sucks!
I hope you can get started on Rebif soon and it works for you. I think it's kind of nerve racking waiting and seeing if the drug works or you have to start over on a new med.
I was without a car yesterday. At least it was just my antenna that was making the noise, but I have to get my belts replaced soon so they don't cause me any problems. My car may be old (10 y/o) but I still love it.
duttin
01-09-2007, 07:13 PM
Rebif will be here tomorrow.MS lifeline said they'd get in touch with home health nurse.She could be here thursday.I told them I plan on doing my shots monday wensday and friday.So wait till friday.Give me time to ponder over this.I hate needles!My copay is only 2 bucks so I can't complain.They wanted me to put it on my credit card.I told them I'd send them a check.
Bucks game was bad!!!
Bucks game was bad!!!
rilsam
01-10-2007, 11:39 PM
The needles isn't the bad part. It's how dense the meds are that causes the pain. Usually the needles are pretty small. Let me know how it goes.
I guess when the bucks were congratulating Ginn on his touch down his own team member stepped on his ankle and that's what put him out of the game. Such a sorry state.
My GP is taking over my pain management. He started me on neurotin on the lowest dose possible to see if I will tolerate it. He told me people with MS can have a tendency to have a paradoxyl effects to meds ( it does the opposite of what it should). My neuro put me on a high dose skelexan (muscle relaxer). I took a very lose dose last night and I still can barely walk due to the muscle spasms.
I'm truly liking my neuro less and less but I'll give her one more try. I'm due to see her at the end of next month. I'll just have my GP follow me untill then.
I guess when the bucks were congratulating Ginn on his touch down his own team member stepped on his ankle and that's what put him out of the game. Such a sorry state.
My GP is taking over my pain management. He started me on neurotin on the lowest dose possible to see if I will tolerate it. He told me people with MS can have a tendency to have a paradoxyl effects to meds ( it does the opposite of what it should). My neuro put me on a high dose skelexan (muscle relaxer). I took a very lose dose last night and I still can barely walk due to the muscle spasms.
I'm truly liking my neuro less and less but I'll give her one more try. I'm due to see her at the end of next month. I'll just have my GP follow me untill then.
duttin
01-11-2007, 08:08 PM
Little disgusted today,now they are not starting rebif until next week,our county health nurses refuse to work with MS patients.So I've worked my butt off trying to finish have started projects and they drop this bomb on me.I have lost the central vision in my left eye again.My legs are buzzing and I'm really exhausted.Until they get a nurse here to start the steroids,the neuro has increased the valium and baclofen,I feel I'm moving at a snails pace.I'll never get these have little projects done.Well back upstairs to clean up for the night.
rilsam
01-12-2007, 11:51 PM
Some nurses are so stupid. I don't know how or why they got into the profession and remember I speak from about 10 years of experience. Don't over do it you don't want to add to your misery. I've started to try and exercise again today. I lasted about 10 min. At least it's a start. I don't no if it's the meds or the MS but my legs just don't want to work. I look like a little old lady shuffling my feet and by the time a make it up the stairs I feel like I've run a mile.
We're going to try to take the trees down tomorrow. I'm dreading tomorrow. If I manage I think I'll try to start my spring cleaning this week even if it's only one drawer a day.
Have you seen Armed and Famous. Our little town does have some charactors in it. I never did see any of the actors. Oh well.
We're going to try to take the trees down tomorrow. I'm dreading tomorrow. If I manage I think I'll try to start my spring cleaning this week even if it's only one drawer a day.
Have you seen Armed and Famous. Our little town does have some charactors in it. I never did see any of the actors. Oh well.
duttin
01-13-2007, 09:02 AM
I can't even think of spring cleaning,my upstairs is in such a disaray.half dry walled spots.I'm committing myself to finshing the bathroom caulk and putting corner edging on the wall paper corners.Then the dppr trim has been cut and stained for 2 years and I'm gonna nail that in.That room will be completed.
I finished the trim on down stairs bathroom yesterday.plus the remaining caulk.My hubby starts a project then never completes the final touches.
My goal is to complete these projects before starting rebif.I don't move like I use to.
I finished the trim on down stairs bathroom yesterday.plus the remaining caulk.My hubby starts a project then never completes the final touches.
My goal is to complete these projects before starting rebif.I don't move like I use to.
rilsam
01-13-2007, 11:26 PM
Well, the trees came down. My husband took all the ornaments off and I packed them. I still have containers to go through to get rid of stuff I don't want. So it was a productive day. The only real nitty gritty work that needs to be done in our house is I have to organize the garage and put in shelves and I need to decorate the girls room. My oldest is turning 10 next week so I told my husband we'll do it for her b-day but he has to help. His good at helping but not at getting started.
I don't move like I use to either. Infact it was hard to just pack the ornaments today. At least for Xmas my mom bought me a pretty blue flowery cane, which is not so depressing as a wood one.
I don't move like I use to either. Infact it was hard to just pack the ornaments today. At least for Xmas my mom bought me a pretty blue flowery cane, which is not so depressing as a wood one.
duttin
01-15-2007, 07:12 PM
The cane sounds pretty.Good that the trees came down.
Had my first rebif shot today,it was actually easy,felt a little flush afterwards and my stomache is quezzy but that should pass.Just really tired right now.
Had my first rebif shot today,it was actually easy,felt a little flush afterwards and my stomache is quezzy but that should pass.Just really tired right now.
rilsam
01-17-2007, 01:50 PM
I'm glad you started on Rebif. How long to you give it to decide if it's working for you?
I had a bad fibro day Mon. so I took flexeral. I slept the evening and night away. When everyone got sent off Tues. I went back to sleep. I feel much better today. But I have noticed that this last week the tremors are back. It's time to up my neurotin so maybe that will help.
I had a bad fibro day Mon. so I took flexeral. I slept the evening and night away. When everyone got sent off Tues. I went back to sleep. I feel much better today. But I have noticed that this last week the tremors are back. It's time to up my neurotin so maybe that will help.
duttin
01-17-2007, 06:15 PM
The rebif is started out at 8 mcg 3 times a week for 2 weeks then22mcgs for 2 weeks then 44mcgs is full dose.Its purpose is to slow down the relapses.I guess it doesn't do much for the current symptoms,but hopefully it will with some of them.DR said try it for 6 months.
Hope you get to feeling better.
Hope you get to feeling better.
rilsam
01-18-2007, 02:38 PM
I'm feeling better. I think the neurotin has kicked in. I upped my dose today and don't seem to be any more tired than usual. So far so good. I'm really getting tire of the cold but at least we're not getting the ice. I can't wait till spring. I think it will help my mood even if it doesn't help the body.
So now you started on the MS drug, to bad you have to wait so long to see if it works.
So now you started on the MS drug, to bad you have to wait so long to see if it works.
duttin
01-19-2007, 10:22 PM
Glad you are getting releif from the neurontin.I was allergic to it.
Got my new leg brace today,huge difference in walking,my leg goes straight,but can't drive for 30 days until I get use to it.Its hard to bend down,its a little weird trying to get up.It'll just take time.I can even walk the stairs ,a little slow but the leg don't kick outward,no more scuff marks on the walls,yea.
Got my new leg brace today,huge difference in walking,my leg goes straight,but can't drive for 30 days until I get use to it.Its hard to bend down,its a little weird trying to get up.It'll just take time.I can even walk the stairs ,a little slow but the leg don't kick outward,no more scuff marks on the walls,yea.
rilsam
01-20-2007, 02:38 PM
I'm so glad your leg brace is working. It would be very hard for me to not drive for 30 days. I'm the sole driver for the girls and all the errands. This cold is getting to be to much. I feel like I'm never going to warm up. Our highs have been about 30 degrees. My oldest just turned 10. Time sure does fly.
duttin
01-23-2007, 10:55 PM
The driving bugs me but its been icy hear si I stay in.The leg brace needs some modifying it rubs my bony ankle raw.
I have worked my butt off that last few days.Had a house apprasial and many unfinished projects to complete.I made the dead line,but now I'm exhausted and physically in alot of pain.thankk God my meds gave me the ability to work through it all and complete all the projects.
Now I'm on strike the rest of the week and gonna seriously get use to the new leg brace.I wore the short one to complete my projects and now really need to focus on getting aquainted with the new brace.Its hard bending down and sitting then trying to get up.But in time I'll get use to it.When I do wear it or have had the chance,I'm walking a 100 % better.Its awesome to walk a straigt line without hitting everything in my way.
I have worked my butt off that last few days.Had a house apprasial and many unfinished projects to complete.I made the dead line,but now I'm exhausted and physically in alot of pain.thankk God my meds gave me the ability to work through it all and complete all the projects.
Now I'm on strike the rest of the week and gonna seriously get use to the new leg brace.I wore the short one to complete my projects and now really need to focus on getting aquainted with the new brace.Its hard bending down and sitting then trying to get up.But in time I'll get use to it.When I do wear it or have had the chance,I'm walking a 100 % better.Its awesome to walk a straigt line without hitting everything in my way.
rilsam
01-25-2007, 12:45 PM
You were a busy little bee the last few days. I'm glad you got everything done. I'm sure you'll be use to your brace in no time. Then it will be time to try to quit smoking again.
I think I'm starting to have a flare again. I walk across the room then feel like I need to rest. The tremors and headaches are back and I've experienced two bouts of bowel incontinence. I was lucky enought to make it to the bathroom in time with not even a second to spare. Of course I called my neuro doc Mon. and I haven't heard a peep. I just can't handle a doc that won't call me back. She could even have her nurse call to say that we won't do anything at this time. So I give up. I talked to my GP and he's getting me a referral to another neuro that is in his office. It will be nice to stay in town. But he only comes up once a week. He is affiliated with Indiana University which have their own MS clinic so he can always refer me or get their opinion about treatment. Ithink the other doc has just washed her hands of me. But I did have some doubts bout how good she from some of the things she said and did.
So I have to clean my house today and tomorrow for a group of girls Sat. needless to say it is slow going. Wish me luck.
I think I'm starting to have a flare again. I walk across the room then feel like I need to rest. The tremors and headaches are back and I've experienced two bouts of bowel incontinence. I was lucky enought to make it to the bathroom in time with not even a second to spare. Of course I called my neuro doc Mon. and I haven't heard a peep. I just can't handle a doc that won't call me back. She could even have her nurse call to say that we won't do anything at this time. So I give up. I talked to my GP and he's getting me a referral to another neuro that is in his office. It will be nice to stay in town. But he only comes up once a week. He is affiliated with Indiana University which have their own MS clinic so he can always refer me or get their opinion about treatment. Ithink the other doc has just washed her hands of me. But I did have some doubts bout how good she from some of the things she said and did.
So I have to clean my house today and tomorrow for a group of girls Sat. needless to say it is slow going. Wish me luck.
duttin
01-25-2007, 02:44 PM
Yes getting use to the leg brace.I drove yesterday to the mall.had to get a new pair of shoes.The old shoes pinched my feet with the leg brace.
Oh yea the quit smoking is still on my mind.
I hope your not relapsing,I hope you get into a DR that will returen your calls and be a little more caring.
Oh yea the quit smoking is still on my mind.
I hope your not relapsing,I hope you get into a DR that will returen your calls and be a little more caring.
rilsam
01-26-2007, 10:43 AM
I still haven't heard a peep from my MS specialist. My GP office did call and they are setting up an appt.. I should hear from them today so hopefully they'll get my in Tues.. The way my luck is going though it won't be that soon. My leg is killing me today so I'm going to go try to get comfy.
duttin
01-26-2007, 11:20 AM
Hopefully you'll get in soon.Sorry yo hear about your leg.Hope you get comfy.
I think everything I done last week caught up with me!!!
I'm getting site reactions from the rebif shots.But not on my legs.Guess I should call my neuro.
I think everything I done last week caught up with me!!!
I'm getting site reactions from the rebif shots.But not on my legs.Guess I should call my neuro.
rilsam
01-27-2007, 10:44 PM
Well, it's been a rough few days. I can't get in to the new neuro in town until March but I'm going to call his office in Indy and see if I can be seen sooner. I've had a lot of pain and now the vertigo is back, plus my eyes keep blurring.
We had my daughters b-day party. I wouldn't think a bunch of 3rd and 4th graders could gossip so much. We had a total of 8 kids. They're all pretty good and we didn't have any problems. I always have two crafts for them to do so they don't get too wild. It went great but really tired me out. My daughters didn't quite understand why I would be too tired for a few to spend the night. I'm sure I'm going to pay tomorrow.
Hope your rebif reaction isn't too bad, and the doc was able to help.
Why is it always so easy for a women to over do it? We really don't know how to be anything other than caregivers.
We had my daughters b-day party. I wouldn't think a bunch of 3rd and 4th graders could gossip so much. We had a total of 8 kids. They're all pretty good and we didn't have any problems. I always have two crafts for them to do so they don't get too wild. It went great but really tired me out. My daughters didn't quite understand why I would be too tired for a few to spend the night. I'm sure I'm going to pay tomorrow.
Hope your rebif reaction isn't too bad, and the doc was able to help.
Why is it always so easy for a women to over do it? We really don't know how to be anything other than caregivers.
duttin
01-28-2007, 09:57 PM
Glad your daughters party was a hit.
I don't know why we over do it.I guess we are moms and know what has to be done.
The rebif is going okay,this weekend I've done nothing but sleep.
It's been so dang gone cold!!!
I don't know why we over do it.I guess we are moms and know what has to be done.
The rebif is going okay,this weekend I've done nothing but sleep.
It's been so dang gone cold!!!
rilsam
01-29-2007, 10:15 AM
Well I lucked out! There was a cancellation at the neurologist office in town so I get to be seen tomorrow. I had planned to drive to Indy next week to see him. I doubt I'll get answers but maybe he won't be so scattered brained and actually return my calls. I liked my MS specialist but her charts were such a mess that she couldn't keep anything straight. And tests I thought I should have she wouldn't schedule (evoked potential and LP) but did and EEG which hardly shows anything on people and she's pushing a tilt table test that the cardialogist refuses to do because it comes with risks and my vertigo isn't bad enough. She's also changed her mind about 4 times on me seeing a neuro surgeon due to a 2mm bone protusion with no spinal cord involvment. She's just a bit all over the place.
I might be in pain today but my spirits our good. Hopefully they'll stay that way after tomorrow.
My 3rd grader had to go outside for recess Friday with a wind chill of 11. If it happens again I'll be putting in a call to the principal. What happened to our mild winter?
I might be in pain today but my spirits our good. Hopefully they'll stay that way after tomorrow.
My 3rd grader had to go outside for recess Friday with a wind chill of 11. If it happens again I'll be putting in a call to the principal. What happened to our mild winter?
duttin
01-29-2007, 08:09 PM
Glad your getting a quicker appointment,its hard when your Dr is a scatter brain.
Why won't she do the test ?Keep asking!!!!
Your neuro can send you to an ENT to test the vertigo with less avassive testing.
I've done nothing but sleep the last 3 days away.This is drivimg me nuts.Plus the cold weather has caused my muscles to spazz more than normal.
Tonight I tirate my rebif up.Not looking forward to that.
Little kids shouldn't be out in this type of weather,they'll freeze.
Why won't she do the test ?Keep asking!!!!
Your neuro can send you to an ENT to test the vertigo with less avassive testing.
I've done nothing but sleep the last 3 days away.This is drivimg me nuts.Plus the cold weather has caused my muscles to spazz more than normal.
Tonight I tirate my rebif up.Not looking forward to that.
Little kids shouldn't be out in this type of weather,they'll freeze.
rilsam
01-30-2007, 11:22 PM
It's freezing and is suppose to get worse. Adults shouldn't even be out in this weather. The kids have stayed inside school since that day.
This new neuro seemed to have a brain. He agreed with my assessment of my other neuro as a scatter brain. He said he wasn't sure if it was MS because my tests were inconclusive. He ordered more blood work to check my muscles which was normal but my sed rate was a little elevated but I don't know what that means (my husband can get all my labs as they come in which is really nice). I also found out I've lost some sensation in my left foot. Oh well. He of course ordered an evoked potential and said that it should tell us alot. He wants to hold off on the LP. I told him what my neuro said about LP's and of course he totally disagreed. But he feels if the other tests show him what he needs he doesn't want to put me through the LP. So I'm waiting for his nurse to schedule me the appt. which unfortunately is in Indy. It's also nice because my GP is in the same building (once a week) and talked to him today and is cordinating my care with him. My GP was nice enough to e-mail me and let me know.
I would love to nap but I always wake up with tremors which make me feel worse than being tired.
Good luck with the rebif. I hope it all goes well.
This new neuro seemed to have a brain. He agreed with my assessment of my other neuro as a scatter brain. He said he wasn't sure if it was MS because my tests were inconclusive. He ordered more blood work to check my muscles which was normal but my sed rate was a little elevated but I don't know what that means (my husband can get all my labs as they come in which is really nice). I also found out I've lost some sensation in my left foot. Oh well. He of course ordered an evoked potential and said that it should tell us alot. He wants to hold off on the LP. I told him what my neuro said about LP's and of course he totally disagreed. But he feels if the other tests show him what he needs he doesn't want to put me through the LP. So I'm waiting for his nurse to schedule me the appt. which unfortunately is in Indy. It's also nice because my GP is in the same building (once a week) and talked to him today and is cordinating my care with him. My GP was nice enough to e-mail me and let me know.
I would love to nap but I always wake up with tremors which make me feel worse than being tired.
Good luck with the rebif. I hope it all goes well.
duttin
02-01-2007, 10:22 PM
Glad you like the new neuro.
Evoked potentials can explain alot.
A high sed rate is inflamation.which explains your fibro.
I'm having a major flair right now and gonna strangle the PA if I don't hear from my neuro tomorrow.I can walk about 4 feet before the muscle spasms cripple me.Its been a rough week.
The rebif injects are getting better or I should say easier.I still get site reactions but I guess thats normal.
Evoked potentials can explain alot.
A high sed rate is inflamation.which explains your fibro.
I'm having a major flair right now and gonna strangle the PA if I don't hear from my neuro tomorrow.I can walk about 4 feet before the muscle spasms cripple me.Its been a rough week.
The rebif injects are getting better or I should say easier.I still get site reactions but I guess thats normal.
rilsam
02-05-2007, 05:17 PM
I can not believe how cold it is here. The schools closed for two hours because the temp was -7 with a wind chill of -20. I feel like I'm in a freezer when I go outside. I want summer!!
I've been doing nothing for the past three days. It's amazing how much better you can feel when you do nothing to stress yourself. I upped my neurotin at night to 200mg. I know I'm on baby doses so my doc won't care but I guess I better let him know. But this is the first time I've been grocery shopping in so long with no pain just fatigue and a little shake. I forgot what it was like to feel healthy. Hopefully it will last a little bit. I get my E.P. Friday. Hopefully it will show what direction to go in.
Hope you're staying warm.
I've been doing nothing for the past three days. It's amazing how much better you can feel when you do nothing to stress yourself. I upped my neurotin at night to 200mg. I know I'm on baby doses so my doc won't care but I guess I better let him know. But this is the first time I've been grocery shopping in so long with no pain just fatigue and a little shake. I forgot what it was like to feel healthy. Hopefully it will last a little bit. I get my E.P. Friday. Hopefully it will show what direction to go in.
Hope you're staying warm.
duttin
02-05-2007, 09:36 PM
My kids had no school today and its cancelled for tomorrow.Lucky me!!!
Glad the neurontin is helping.I just started oral steroids.They are nasty tasting.
Yes,I'm staying warm,hubby keeps putting wood in the fireplaces and he had it 80 degrees in here.It made me sick.Told him to keep his hands off the fireplaces.
Rebif is going okay trying to get past the site reactions,they just make me tired the next day.
Good luck with EP.
Stay warm.
Glad the neurontin is helping.I just started oral steroids.They are nasty tasting.
Yes,I'm staying warm,hubby keeps putting wood in the fireplaces and he had it 80 degrees in here.It made me sick.Told him to keep his hands off the fireplaces.
Rebif is going okay trying to get past the site reactions,they just make me tired the next day.
Good luck with EP.
Stay warm.
rilsam
02-08-2007, 11:32 AM
The girls have been having two hour delays for school all week so far. It's hard getting everything done when that happens. I did something stupid. I snow blowed the last two days. My left hand didn't really work yesterday now my right arm is acting up. It's resting on the desk as I type because it can't support its self. I'm so tired of not being able to do things. I guess I figure if I'm going to hurt I might as well get things done. I did a 10 min work out today, now I'm shaking like a leaf. I guess I need to try this one more time to make sure I'm just not being a lazy wimp. I know it sounds stupid but at this point I'm beginning to doubt myself. Also excercise helps fibro so I can't stray to far away from exercising but also I can reasure the docs that exercising doens't improve my health.
Staying warm is a whole nother thing. One day I'll be warm again. So I guess I just need to look to the future.
Staying warm is a whole nother thing. One day I'll be warm again. So I guess I just need to look to the future.
duttin
02-08-2007, 03:29 PM
Smile,they said here in the next to 7-10 days to expect a blizzard.Yea!!!
The rebif and steroids are kicking my butt.Ended up in the Er the DR was a real PUTTS!!! To say the least.
I have inflamatory gastrial neuritis,well no crap,I am on a whole arsonal of meds and steroids that are slowly eating away my stomach lining.
Gave me some stomach meds to ease the pain and to coat the stomach lining.He ask if I was there for pain meds,heck I have an arsonal of them here.
I wanted my stomach pain to go away.
I stopped the zanaflex as this will cause stomach problems.
I am on a clear diet for 3 days and the steroids are not helping I'm hungry.
I hope you feel better.It will get warm soon.
The rebif and steroids are kicking my butt.Ended up in the Er the DR was a real PUTTS!!! To say the least.
I have inflamatory gastrial neuritis,well no crap,I am on a whole arsonal of meds and steroids that are slowly eating away my stomach lining.
Gave me some stomach meds to ease the pain and to coat the stomach lining.He ask if I was there for pain meds,heck I have an arsonal of them here.
I wanted my stomach pain to go away.
I stopped the zanaflex as this will cause stomach problems.
I am on a clear diet for 3 days and the steroids are not helping I'm hungry.
I hope you feel better.It will get warm soon.
rilsam
02-09-2007, 12:09 PM
I think that the ER doc's are so use to pain med seekers that they forget that people who are in pain aren't all seeking narcatics. I know what you mean though. I don't want pain meds I just want to have the pain go away. I want to be healed. And what pain meds do they think would help a stomach to heal? They can be idiots.
We're suppose to get snow Monday night. But I think at the end of next week we might hit 32 degrees. I never thought I would be excited about that.
The schools water main broke so I have my kids home today. Of course this happens when I have to go to Indy for my evoked pot. I was able to get a sister because it would be a pain to have to take them with me.
Wish me luck it's in a few hours!
We're suppose to get snow Monday night. But I think at the end of next week we might hit 32 degrees. I never thought I would be excited about that.
The schools water main broke so I have my kids home today. Of course this happens when I have to go to Indy for my evoked pot. I was able to get a sister because it would be a pain to have to take them with me.
Wish me luck it's in a few hours!
duttin
02-11-2007, 07:58 PM
Well it looks like we are going to get hit big time by snow Tuesday.Yea,I'll have my kids home again.They are calling for 6-9 inches by wensday afternoon.
I'm still sicker than a dog.I can't eat without being in severe stomach pain.I see my GP tomorrow.This has been like this since Wensday.
I did get up and move around today,leg spasms were getting to me.
I'm still sicker than a dog.I can't eat without being in severe stomach pain.I see my GP tomorrow.This has been like this since Wensday.
I did get up and move around today,leg spasms were getting to me.
rilsam
02-15-2007, 12:12 AM
Did we have fun with the snow? My kids sure did. We had drifts of about 4 feet in some areas. The driveway had to be plowed 3 times yesterday then again today. Of course I helped and my arms are shaking and weak now. I have a GP appt tomorrow and have to drop my kids off at the neighbors (if the docs office is open). Were suppose to get some light snow this weekend. I so ready for the warm up. I think it's 0 degrees right now.
I'm so sorry about your stomach. I'm sure you know this but just in case you don't : stay sitting at least 20 min after you eat, stay away from anything with acid for awhile like tomatoes, orange juice, caffine, and when you do lay down you are better off laying on your left side because it's the side your stomach empties into your intestines. I hope you made your appt. with all the snow.
I'm so sorry about your stomach. I'm sure you know this but just in case you don't : stay sitting at least 20 min after you eat, stay away from anything with acid for awhile like tomatoes, orange juice, caffine, and when you do lay down you are better off laying on your left side because it's the side your stomach empties into your intestines. I hope you made your appt. with all the snow.
duttin
02-15-2007, 02:22 PM
No,I cancelled my appointment,we had about 18 inches of snow and my kids have been home all week.
They won't be back in school until Tuesday.
My stomach is getting a little better.I'm still on the oral steroids and tirating down ,now down to 60mgs for the next 20 days.Them things are nasty.
Getting use to the full dose of Rebif,the day after kicks my butt.I have not seen much of a difference but it has only been a month.
I've been getting silly little headaches but I think they are from the steroids.I've been staying home , because with the high doses of the prednisone I can catch every germ out there.Which means a simple cold can turn in to pnemonia in a matter of hours.
My GP is really upset on how the steroids were prescribed.he said they should of started out low ,tirated up to 100mgs,then tirate down.
I see my neuro next week.My insurance said come March first they will no longer cover the Rebif,I have to try one of the other Disease modyifying meds first.My neuro better side step that route.It was hard to get use to the rebif and now the good old insurance company wants to play with my meds.Some that I have been on,when I went to the pharmacy the insurance wouldn't pay but the neuro got around that.
The snow is pretty here,the sun is shining,the kids were out for a while yesterday and today.Oh,I hate the wet cloth's though.
I have advoided all things with acid in it and finally getting back to a some what normal diet.
They won't be back in school until Tuesday.
My stomach is getting a little better.I'm still on the oral steroids and tirating down ,now down to 60mgs for the next 20 days.Them things are nasty.
Getting use to the full dose of Rebif,the day after kicks my butt.I have not seen much of a difference but it has only been a month.
I've been getting silly little headaches but I think they are from the steroids.I've been staying home , because with the high doses of the prednisone I can catch every germ out there.Which means a simple cold can turn in to pnemonia in a matter of hours.
My GP is really upset on how the steroids were prescribed.he said they should of started out low ,tirated up to 100mgs,then tirate down.
I see my neuro next week.My insurance said come March first they will no longer cover the Rebif,I have to try one of the other Disease modyifying meds first.My neuro better side step that route.It was hard to get use to the rebif and now the good old insurance company wants to play with my meds.Some that I have been on,when I went to the pharmacy the insurance wouldn't pay but the neuro got around that.
The snow is pretty here,the sun is shining,the kids were out for a while yesterday and today.Oh,I hate the wet cloth's though.
I have advoided all things with acid in it and finally getting back to a some what normal diet.
rilsam
02-20-2007, 03:10 PM
Sorry it took so long to write back. It was a crazy week last week with the kids. Then my daughter came down with strep throat yesterday. I'm looking forward to the warm up and hopefully no more snow.
The insurance companies really suck! Last month Anthem blue cross was saying how they made a 39% profit in 2006. Duh, you can when you hurt the people insured and the docs! Something will have to be done with the insurance companies and the sue happy lawyers if things are going to get reasonable. I'm all for sueing if there is a real reason but there also has to be a realistic settlement, not the 20mil. type. Okay I'll get off my soap box.
My sister finally got off steriods for her colitis but at least she only started on 60mgs. It sucked for her too but obviously not as bad. Hopefully you'll do better with the smaller doses.
My evoked pot. wasn't back when I saw my GP so I have to wait untill the beginning of March when I see my neuro. I'm actually doing pretty good except for being tired but the neurotin has really kept my pain very tolerable. I hope I just didn't jinx myself. LOL.
The insurance companies really suck! Last month Anthem blue cross was saying how they made a 39% profit in 2006. Duh, you can when you hurt the people insured and the docs! Something will have to be done with the insurance companies and the sue happy lawyers if things are going to get reasonable. I'm all for sueing if there is a real reason but there also has to be a realistic settlement, not the 20mil. type. Okay I'll get off my soap box.
My sister finally got off steriods for her colitis but at least she only started on 60mgs. It sucked for her too but obviously not as bad. Hopefully you'll do better with the smaller doses.
My evoked pot. wasn't back when I saw my GP so I have to wait untill the beginning of March when I see my neuro. I'm actually doing pretty good except for being tired but the neurotin has really kept my pain very tolerable. I hope I just didn't jinx myself. LOL.
duttin
02-20-2007, 03:30 PM
Sorry to hear about your daughters strep throat.
Finally my kids went back to school after a week of 3 teenagers,oh can they drive a mother crazy.
I had a terrible MS right side seizure friday night.I'm finally getting back to moving my right side.I terrified my son.I really think the valium helped.It was mostly a chronic spasm that wouldn't release and couldn't straighten my rt leg or arm.Plus it pulled on the rods in my back.But I see my neuro tomorrow.
I'm glad your feeling better.I got out and walked a little today.But there still so much snow everywhere.It's slowly melting.
Finally my kids went back to school after a week of 3 teenagers,oh can they drive a mother crazy.
I had a terrible MS right side seizure friday night.I'm finally getting back to moving my right side.I terrified my son.I really think the valium helped.It was mostly a chronic spasm that wouldn't release and couldn't straighten my rt leg or arm.Plus it pulled on the rods in my back.But I see my neuro tomorrow.
I'm glad your feeling better.I got out and walked a little today.But there still so much snow everywhere.It's slowly melting.
rilsam
02-27-2007, 02:29 PM
So, did you survive the ice storm. I swear this weather better improve soon!
I had my 40th B-Day and my 11th anniversary this past week. I had a lovely time with my children. Where was my husband? Unfortunately working. We're hoping to do go out to dinner this weekend. How did your neuro appt go? Mine's Thursday. I'm not really looking forward to it. I'm just tired of seeing docs.
I had my 40th B-Day and my 11th anniversary this past week. I had a lovely time with my children. Where was my husband? Unfortunately working. We're hoping to do go out to dinner this weekend. How did your neuro appt go? Mine's Thursday. I'm not really looking forward to it. I'm just tired of seeing docs.
duttin
02-27-2007, 09:43 PM
Happy 40th and anniversary.
Survived the storm and glad my kids are back in school.
Neuro appointment went well.
I'm going through a major attack,even being on the oral steroids.Tapering off them and to start IV steroid therapy next week sometime.
This attack is kicking my butt.I have constant buzzing in my spine and can hardly walk.the left eye vision is basically comes and goes.
the rebif injections are going great.Finally have that down.
But they need to get the other symptoms and this attack under control soon.
This is my second attack in a few weeks.
I keep pushing through it,but last night I finally caved in and told my hubby and kids I can't move anymore.I couldn't get my legs to go.
I'm not one to sit around.My hubby took me to the store today and it was all I could was to get groceries.He said he's ready just to take me to the Er and leave me there.I don't think so!!!!
Survived the storm and glad my kids are back in school.
Neuro appointment went well.
I'm going through a major attack,even being on the oral steroids.Tapering off them and to start IV steroid therapy next week sometime.
This attack is kicking my butt.I have constant buzzing in my spine and can hardly walk.the left eye vision is basically comes and goes.
the rebif injections are going great.Finally have that down.
But they need to get the other symptoms and this attack under control soon.
This is my second attack in a few weeks.
I keep pushing through it,but last night I finally caved in and told my hubby and kids I can't move anymore.I couldn't get my legs to go.
I'm not one to sit around.My hubby took me to the store today and it was all I could was to get groceries.He said he's ready just to take me to the Er and leave me there.I don't think so!!!!
rilsam
03-01-2007, 02:56 PM
I'm sorry to hear your feeling so bad but I'm glad your appt went well. Mine sucked! My neuro told me that it can't be neurologic because I have to much different pain. That I should only have one specific pain. My test have all come back normal so therefore I can't have MS. So he decided it had to be fibro, which is a catch all dx because he's to lazy or to dumb to deal with me. If he read one MS baord I think he might realize that there is alot of pain involved. I will go to my rheumy agian because my husband said it would be good to get it reaffirmed that it's not MS. We've talked about going to the Cleveland Clinic but didn't really think it would come to that. I have an e-mail to my GP so he'll let me know what he thinks. I'm so tired of this. I know in my heart that it's not fibro. I know that the stabbing pains and the pains down my arms and legs are nerve pain. I'm just so frustrated:blob_fire . I've given myself a headache. I'll talk to my husband tonight and we'll decide the next step. Wish me luck. I think I'm going to have to be crippled before the neuro's take me seriously.
duttin
03-01-2007, 09:50 PM
The cleveland clinic is an awesome facility!!!!!
The technology there is awesome!!!
Still in relapse and in don't seem to be leaving.I start IV steroids next wensday.
I'd like to have a neuro tell me that there's not migrating pain with MS.I'd right now rip there heads off!!!
Its raining really bad here and we have flood warnings out.
I want summer to come.
The technology there is awesome!!!
Still in relapse and in don't seem to be leaving.I start IV steroids next wensday.
I'd like to have a neuro tell me that there's not migrating pain with MS.I'd right now rip there heads off!!!
Its raining really bad here and we have flood warnings out.
I want summer to come.
rilsam
03-04-2007, 10:59 AM
I have a rheumy appt. at the end of the month to confirm yet again that this is not fibro. I'll ask her for a copy of it for my files. After that if I continue to feel the same so so that I've been feeling I think I'll take a break from docs. At this point I think I've just had enough. But when things start to get worse I'll go to the Cleveland Clinic. I'm just tired of docs right now. Even my girls pediatrician deserves to be slapped around. It would be nice to wait until summer so I can take my kids. They can visit family while I'm being seen. Or better yet maybe things won't get worse for years. But I would sure like someone to tell me what's wrong so I can try to have a better quality of life.
We didn't flood as badly as we were suppose to. Yesterday the sun was shining and it was snowing. Maybe if it was nicer outside I would feel better, or at least my spirit would.
How long do your relapses usually last?
We didn't flood as badly as we were suppose to. Yesterday the sun was shining and it was snowing. Maybe if it was nicer outside I would feel better, or at least my spirit would.
How long do your relapses usually last?
duttin
03-10-2007, 12:28 AM
Sorry I didn't post sooner.This attack has kicked my butt.
I had another severe attack again wensdsday night in my sleep.The spasticity was so bad that if I could of reached a phone I would of called an EMS.
My hubby works midnights and my kids up stairs didn't here me.Hubby called the neuro(which was a first) and told him that this was the 3rd attack in 3 weeks and something had to be done.They switched my meds,made them stronger and added low dose quinine again.It makes my ears ring worse than usual.
Monday I'm going to the hospital as an inpatient for IV solumedrol infusions and PT for 5 days.My neuro is taking steps to treat it aggressively.I hate the idea of a 5 day hospital stay,but maybe the rest will do me good.
Hopefully it will help my vision!!!
I don't blame you about the DRs.It gets tiring to here the same old crap.
I had another severe attack again wensdsday night in my sleep.The spasticity was so bad that if I could of reached a phone I would of called an EMS.
My hubby works midnights and my kids up stairs didn't here me.Hubby called the neuro(which was a first) and told him that this was the 3rd attack in 3 weeks and something had to be done.They switched my meds,made them stronger and added low dose quinine again.It makes my ears ring worse than usual.
Monday I'm going to the hospital as an inpatient for IV solumedrol infusions and PT for 5 days.My neuro is taking steps to treat it aggressively.I hate the idea of a 5 day hospital stay,but maybe the rest will do me good.
Hopefully it will help my vision!!!
I don't blame you about the DRs.It gets tiring to here the same old crap.
rilsam
03-11-2007, 10:50 AM
I'm so sorry you have to go to the hospital. I know how much that sucks. Don't forget your own pillow and ask for an egg crate mattress cover to help make the bed a little more comfortable. I think the bed and the food are terrible. I wish you all the luck in the world for a speedy recovery. I guess you have to quite smoking for the hosp stay? My thought and prayers are with you.
duttin
03-19-2007, 02:36 PM
Sorry about the delay in getting back.
The hospital stay was great.Personnel was fantastic.
I don't know if the solu-medrol helped or not,time will tell.
I have had an acute attack while at the hospital and its been really tough getting through it.Can hardly walk,double vision.Had lots of physical therapy at the hospital.
They are controlling the pain and burning pain now with fenytanol patches.It seems to help some.
They said it can take a few weeks to get use to the solu-medrol to see if it helped.I didn't expect to feel this bad coming home from the hospital.But I guess the attack didn't help things either.
Hope your doing good.I 'll check in later.
The hospital stay was great.Personnel was fantastic.
I don't know if the solu-medrol helped or not,time will tell.
I have had an acute attack while at the hospital and its been really tough getting through it.Can hardly walk,double vision.Had lots of physical therapy at the hospital.
They are controlling the pain and burning pain now with fenytanol patches.It seems to help some.
They said it can take a few weeks to get use to the solu-medrol to see if it helped.I didn't expect to feel this bad coming home from the hospital.But I guess the attack didn't help things either.
Hope your doing good.I 'll check in later.
rilsam
03-21-2007, 05:10 PM
Things are going pretty well for me. I think I finally have reached remission. The only thing that I've noticed is that when I walk for excercise, after about the second day my legs start spasming where I have to take a muscle relaxant. So I have to make sure I don't over do it. Again this is not fibro. I did ask on the fibro board what they thought. The replies I got pretty much said that it didn't sound like what they have. I guess I'll what till my next relapse than go to the cleveland clinic.
I wish you were feeling it better. It's easier in the hospital because you only have to worry about you. Try not to over due things. Your family got along with you gone they will do fine with the slow version of you.
Are you on oral prednisone? I hope you improve soon.:wave:
I wish you were feeling it better. It's easier in the hospital because you only have to worry about you. Try not to over due things. Your family got along with you gone they will do fine with the slow version of you.
Are you on oral prednisone? I hope you improve soon.:wave:
duttin
03-24-2007, 10:33 PM
Yes,I'm on oral prednisone.i hate it.i can't keep my sugar levels low.They keep shooting over 300.its kicking my butt.
I have been doing gruelling physical therapy,to guickly regain the muscle loss caused by the 3 attacks.pain meds are keeping everything in tack so i can do the therapy.It's gonna be along process.
The left eye vision I gained back has now left again.I'm not winning this battle!!!But refuse to retreat also.
Glad you've went into remission,I hope it stays there.
I have been doing gruelling physical therapy,to guickly regain the muscle loss caused by the 3 attacks.pain meds are keeping everything in tack so i can do the therapy.It's gonna be along process.
The left eye vision I gained back has now left again.I'm not winning this battle!!!But refuse to retreat also.
Glad you've went into remission,I hope it stays there.