duttin
08-27-2007, 09:42 AM
Nikki.
I know you have had your bouts with ON.
When in Chicago,I started getting severe pain in my left eye,pain I've never experienced before.I originally thought it was from air pressure change.
Its been 5 days and the pain is still here,meds are lessoning it,it hurts to move my eyes.
My neuro,that I have had for 6 months had walked out of his practice,can't get into see the new neuro until sept 30th.
Optho won't take new insurance and right now cash strapped.
The trip to chicago was well worth it.My daughter looks great.she hugged me so hard she cracked all my bones in my back.We had a wonderful time with her.
We left home with floods and it flooded up there.A normal 6 hour drive ended up taking 12 and a half hours to get home.
I'm gonna take a few days break,kids went back to school(yea).
Was down at my ma's yesterday helped her ,she's still cleaning up after the flood,feel quilty I'm not gonna help today,but I'm whipped.
I need some down time,plus not much good one eyed,plus I have noticed a severe increase in remembering things,my daughter rambled off a phone number and 5 seconds later I couldn't remember it.
Maybe with all the flood clean up and the trip to and back from chicago then back down to my ma's has just caught up.
Oh,my son scored the first touch down in saturdays game,first one for him and I missed it,maybe thats getting at me also.
You have a good day,I'm gonna figure something out for this eye pain!!!!!!!
I know you have had your bouts with ON.
When in Chicago,I started getting severe pain in my left eye,pain I've never experienced before.I originally thought it was from air pressure change.
Its been 5 days and the pain is still here,meds are lessoning it,it hurts to move my eyes.
My neuro,that I have had for 6 months had walked out of his practice,can't get into see the new neuro until sept 30th.
Optho won't take new insurance and right now cash strapped.
The trip to chicago was well worth it.My daughter looks great.she hugged me so hard she cracked all my bones in my back.We had a wonderful time with her.
We left home with floods and it flooded up there.A normal 6 hour drive ended up taking 12 and a half hours to get home.
I'm gonna take a few days break,kids went back to school(yea).
Was down at my ma's yesterday helped her ,she's still cleaning up after the flood,feel quilty I'm not gonna help today,but I'm whipped.
I need some down time,plus not much good one eyed,plus I have noticed a severe increase in remembering things,my daughter rambled off a phone number and 5 seconds later I couldn't remember it.
Maybe with all the flood clean up and the trip to and back from chicago then back down to my ma's has just caught up.
Oh,my son scored the first touch down in saturdays game,first one for him and I missed it,maybe thats getting at me also.
You have a good day,I'm gonna figure something out for this eye pain!!!!!!!
Sponsor
MSNik
08-27-2007, 10:30 AM
Hi hon. Sorry to hear about this latest symtom, but happy to hear about your daughter and son! Im also glad to hear you are home safely, no matter how long it took you to get there.
About ON. Sounds like maybe..its really hard to tell. ON, to me, feels like the beginnings of a migrane which never really turn into one. I notice alot more pain when I lay down on my side to watch TV and when I try to read. I dont notice quite as much pain when I sit up and look at the TV straight on. Some fo the things you can do to test yourself (althouhg it might be too soon to have these symptoms) is to get a bottle with a lid which is orange or red (tylenol bottles work) and cover one eye, then cover the other eye. See if the color of the lid is the same- exactly the same, or if one looks different. Next thing you can do is sit still and roll your eyes (hopefully they rolll together) around looking at your finger (or have your son point to different spots in your peripheral vision, slowly rotating like a second hand on a clock around the outside). See if there are any areas wher you cant see his finger...peripheral vision is normally affected by ON.
Neurologist sounds like a drag and I hope you made that new appt no matter what, so that when 6 months is up you at least will have a standing appointment. You said opthamologist wont take insurance ...how bout finding another one ? ISnt there at least one in the plan who is commutable to you? Your eyes are NOT somthing to screw with, you know that....
ON left untreated can do one of two things, it CAN get better on its own, if its mild, but it usually hurts alot before that happens, or it can do permanent optical nerve camage. You really should see someone. As far as meds go, no one has EVER given me a single med which has helped. I did get some steroid eye drops once, which helped quite a bit...and of course a round of steroids IV always helps...I know thats the LAST thing you want to hear.
I feel for you. Hopefully, this is really mild or even allergy related, and not ON. But take it easy, keep checking your peripheral vision and if ALL else fails, go to the ER where they HAVE to take your insurance...keep me posted, ok?
Nikki
About ON. Sounds like maybe..its really hard to tell. ON, to me, feels like the beginnings of a migrane which never really turn into one. I notice alot more pain when I lay down on my side to watch TV and when I try to read. I dont notice quite as much pain when I sit up and look at the TV straight on. Some fo the things you can do to test yourself (althouhg it might be too soon to have these symptoms) is to get a bottle with a lid which is orange or red (tylenol bottles work) and cover one eye, then cover the other eye. See if the color of the lid is the same- exactly the same, or if one looks different. Next thing you can do is sit still and roll your eyes (hopefully they rolll together) around looking at your finger (or have your son point to different spots in your peripheral vision, slowly rotating like a second hand on a clock around the outside). See if there are any areas wher you cant see his finger...peripheral vision is normally affected by ON.
Neurologist sounds like a drag and I hope you made that new appt no matter what, so that when 6 months is up you at least will have a standing appointment. You said opthamologist wont take insurance ...how bout finding another one ? ISnt there at least one in the plan who is commutable to you? Your eyes are NOT somthing to screw with, you know that....
ON left untreated can do one of two things, it CAN get better on its own, if its mild, but it usually hurts alot before that happens, or it can do permanent optical nerve camage. You really should see someone. As far as meds go, no one has EVER given me a single med which has helped. I did get some steroid eye drops once, which helped quite a bit...and of course a round of steroids IV always helps...I know thats the LAST thing you want to hear.
I feel for you. Hopefully, this is really mild or even allergy related, and not ON. But take it easy, keep checking your peripheral vision and if ALL else fails, go to the ER where they HAVE to take your insurance...keep me posted, ok?
Nikki
duttin
08-27-2007, 12:26 PM
Thanks Nikki,
I have no peripherial vision in the left eye,everything is a blurr and it hurts like hey dey to move it.Colors seem to be washed out.And yes,I have a left sided head ache from you know where.
Been taking pain meds just to lighten the pain.
My legs are ready to fall off,thats just from doing to much,sitting is difficult and my balance,well lets say I look like a weeble.
Yes I made the appointment sept 30th,I did ask to be put on their cancelation list.
If things don't lesson then I'll go to the area hospital that has neuro's on call.
Pain level is a 10 and this time its all left sided,usually its right sided.I can handle one leg in pain but not both.
Maybe rebif isn't working or things are progressing.
I'm going back to bed!!!!!!!!!
Thanks for the info
T
I have no peripherial vision in the left eye,everything is a blurr and it hurts like hey dey to move it.Colors seem to be washed out.And yes,I have a left sided head ache from you know where.
Been taking pain meds just to lighten the pain.
My legs are ready to fall off,thats just from doing to much,sitting is difficult and my balance,well lets say I look like a weeble.
Yes I made the appointment sept 30th,I did ask to be put on their cancelation list.
If things don't lesson then I'll go to the area hospital that has neuro's on call.
Pain level is a 10 and this time its all left sided,usually its right sided.I can handle one leg in pain but not both.
Maybe rebif isn't working or things are progressing.
I'm going back to bed!!!!!!!!!
Thanks for the info
T
MSNik
08-27-2007, 02:16 PM
Nuffs, (Duttin) uugghh...
I feel so bad for you. I really do, that is the WORST feeling in the world.
Please try to do absolutely NOTHING for the next 48 hours and see how it goes..
I just got back from taking my cat to the vet, once again to be weighed. The good news is she weighs one oz more then she did 6 weeks ago, the bad news is that they had hoped she wouldh gained more like a lb...not going to happen. But you dont need to hear about cats right now.
I have my MRIs on Wed, and an appt early Sept to find out just what Rebif is doing for me. Ill keep you posted, but please let me know if you feel any better at all.
Try taking any of the over the counter non-steroids and see if you can get some relief.
keep me posted.
Hugs,
Nikki
I feel so bad for you. I really do, that is the WORST feeling in the world.
Please try to do absolutely NOTHING for the next 48 hours and see how it goes..
I just got back from taking my cat to the vet, once again to be weighed. The good news is she weighs one oz more then she did 6 weeks ago, the bad news is that they had hoped she wouldh gained more like a lb...not going to happen. But you dont need to hear about cats right now.
I have my MRIs on Wed, and an appt early Sept to find out just what Rebif is doing for me. Ill keep you posted, but please let me know if you feel any better at all.
Try taking any of the over the counter non-steroids and see if you can get some relief.
keep me posted.
Hugs,
Nikki
duttin
08-27-2007, 05:56 PM
Nikki,
Your kitty will gain weight,they ain't like dogs,they are suppose to be dainty.Maybe steroids would help it,the next time they suggest it,I'll send them your kittys way(lol)
Slept 3 hours this afternoon,chiro's office called to ask why I was late.OOPS!
Thought my left hip was out,chiro said not,stated it was probably nerve and muscle pain.Yippee.
My yard needs mowed so bad,the back is still real wet,to be getting more storms by the end of the week.I'm sick of water.
Was advised to get a tetnas(sp) shot.Can't not with all the past steroids,they are advising anyone that had been cleaning flooded areas to get one if ya havn't had one one in the last 5 years.I should be good had one in 2004 after stepping on a nail.
The med center is gonna call this new neuro and see if I can get in as an emergency patient on Wensday,and by pass all the neuro formality and have a more of a formal appt. at the end of sept.I'm fine with that.
If I can't then I will call my GP.They need to get the ON helped,the fatigue under cantrol and the pain level lowered.
I need to be me again.
Your kitty will gain weight,they ain't like dogs,they are suppose to be dainty.Maybe steroids would help it,the next time they suggest it,I'll send them your kittys way(lol)
Slept 3 hours this afternoon,chiro's office called to ask why I was late.OOPS!
Thought my left hip was out,chiro said not,stated it was probably nerve and muscle pain.Yippee.
My yard needs mowed so bad,the back is still real wet,to be getting more storms by the end of the week.I'm sick of water.
Was advised to get a tetnas(sp) shot.Can't not with all the past steroids,they are advising anyone that had been cleaning flooded areas to get one if ya havn't had one one in the last 5 years.I should be good had one in 2004 after stepping on a nail.
The med center is gonna call this new neuro and see if I can get in as an emergency patient on Wensday,and by pass all the neuro formality and have a more of a formal appt. at the end of sept.I'm fine with that.
If I can't then I will call my GP.They need to get the ON helped,the fatigue under cantrol and the pain level lowered.
I need to be me again.
MSNik
08-27-2007, 06:02 PM
Sounds like you have a good plan> Let me know if you get that emergnecy doctors appt, you really need it. You do need to be YOU again! I miss YOU! Youve had a rough summer T, my heart goes out to you...but you know what? Youve also been an inspiration. You havent given up, you havent quit anything, and youve gotten more accomplished this summer around your house and with your kids then I have, and I havent been that sick!;)
Proud of you, girlie.
Hugs,
Nikki
Proud of you, girlie.
Hugs,
Nikki
duttin
08-27-2007, 06:36 PM
Nikki,
This summer has been rough from april on.I have seen my oldest daughter go from being a kid to an adult with her fiance.He had shoulder surgery friday they took the steel plate out of his shoulder.She's grown so much through all this.It don't seem fair to her,but she cares very deeply for this young man.
My next daughter graduating and then the navy.But she's doing what she wants,following her dreams.
Yes,I have worked alot on my house,my garage still needs finished,one eye or not,gonna restart next week,then the attic floor needs laid and insulated and dry walled.YEA!!!!!That'll go quick with family help.
I just can't sit back and let this disease take over,is it progressing yes,I don't need a neuro or mri to tell me that.The lesions are near the brain stem,so I'm screwed anyways,as long as they don't touch or go into the brain stem I'm fine.So sitting back and letting it get me gotta stay a head of it,if possible.
I still have 2 kids to get through school and into their life endevours.I know many would have slowed down,but thats not me.Now if the fatigue would lesson,I'd get more done.
Still can't find my memory,thank god for note pads.
I plan on getting back to normal,some way some how.
A friend of mine has seen great inprovement with LDN,she called last night,she said after 2 days she mowed part of her yard,the first in 4 years.She said it had lessoned the heavyness in her legs.She was on cloud nine and she should be.
This just proves theres help for all of us,wish my neuro would go the LDN route.
T
This summer has been rough from april on.I have seen my oldest daughter go from being a kid to an adult with her fiance.He had shoulder surgery friday they took the steel plate out of his shoulder.She's grown so much through all this.It don't seem fair to her,but she cares very deeply for this young man.
My next daughter graduating and then the navy.But she's doing what she wants,following her dreams.
Yes,I have worked alot on my house,my garage still needs finished,one eye or not,gonna restart next week,then the attic floor needs laid and insulated and dry walled.YEA!!!!!That'll go quick with family help.
I just can't sit back and let this disease take over,is it progressing yes,I don't need a neuro or mri to tell me that.The lesions are near the brain stem,so I'm screwed anyways,as long as they don't touch or go into the brain stem I'm fine.So sitting back and letting it get me gotta stay a head of it,if possible.
I still have 2 kids to get through school and into their life endevours.I know many would have slowed down,but thats not me.Now if the fatigue would lesson,I'd get more done.
Still can't find my memory,thank god for note pads.
I plan on getting back to normal,some way some how.
A friend of mine has seen great inprovement with LDN,she called last night,she said after 2 days she mowed part of her yard,the first in 4 years.She said it had lessoned the heavyness in her legs.She was on cloud nine and she should be.
This just proves theres help for all of us,wish my neuro would go the LDN route.
T
MSNik
08-27-2007, 06:56 PM
You are amazing. Just know that someone in this world thinks so, ok?
I have done a ton of reading on LDN and I too, have thought often that it might be the way to go; however neither my Neuro or MS doc will approve it for me. I dont have anyone in my medical circle who knows how to prescribe it or what to do with it! Keeep me posted on that..
What you have done is nothing short of amazing ...but T, also note, youve had a lousy physical summer. You need to slow down just enough to let your body catch up with your brain and your ideas! Youre pushing yourself really hard to do-do-do, which is commendable, but at some point, you are going to hurt yourself. ;)
Try to have a nice night..ok? Dont think...just relax.
hugs,
N
I have done a ton of reading on LDN and I too, have thought often that it might be the way to go; however neither my Neuro or MS doc will approve it for me. I dont have anyone in my medical circle who knows how to prescribe it or what to do with it! Keeep me posted on that..
What you have done is nothing short of amazing ...but T, also note, youve had a lousy physical summer. You need to slow down just enough to let your body catch up with your brain and your ideas! Youre pushing yourself really hard to do-do-do, which is commendable, but at some point, you are going to hurt yourself. ;)
Try to have a nice night..ok? Dont think...just relax.
hugs,
N
duttin
08-28-2007, 10:35 PM
Nikki,
Still have not heard from new neuro,but will get with my GP tomorrow.
I couldn't just sit today,more rain coming tomorrow,I had to mow,the yard was still extremely wet from the flooding,but the grass was so tall.
My approach to my drive caved in,with my son at work,I had to fill that with gravel.
I did take a 5 hour nap today after coming from the fitness center,don't wanna stop that routine,but the work out was real light.
This house may be getting more than I can handle,5 bedroom.I'd love to down size,but I don't see that happening anytime soon.
I couldn't even do the stairs,to see what disaster is up there.
The kids are back in school and with there sports,work and homework,they don't have time to pitch in like they were.I didn't even have my sons work pants washed,good thing he had a pair of black jeans even though they were to short(lol).
I know I need to slow down,I still have part of the garage to finish maybe this week and the attic needs finished waiting for cooler weather.The attic can be done in a couple of weekends.
I'm ready for fall!!!!!!!!
T
Still have not heard from new neuro,but will get with my GP tomorrow.
I couldn't just sit today,more rain coming tomorrow,I had to mow,the yard was still extremely wet from the flooding,but the grass was so tall.
My approach to my drive caved in,with my son at work,I had to fill that with gravel.
I did take a 5 hour nap today after coming from the fitness center,don't wanna stop that routine,but the work out was real light.
This house may be getting more than I can handle,5 bedroom.I'd love to down size,but I don't see that happening anytime soon.
I couldn't even do the stairs,to see what disaster is up there.
The kids are back in school and with there sports,work and homework,they don't have time to pitch in like they were.I didn't even have my sons work pants washed,good thing he had a pair of black jeans even though they were to short(lol).
I know I need to slow down,I still have part of the garage to finish maybe this week and the attic needs finished waiting for cooler weather.The attic can be done in a couple of weekends.
I'm ready for fall!!!!!!!!
T
MSNik
08-29-2007, 08:55 AM
Im ready for fall too. I just said that yesterday. While everyone at my account is crying over th end of summer, I was like NOT ME- LET IT SNOW! Which is probably an exaggeration, cuz ill hate that too...but honestly, Im ready for cooler weather.
You better be careful girlfriend with that house. Your husband, ex, whatever he is, should be helping you with this stuff. Its still his house, isnt it? Even with him gone at this time? Please dont hurt yourself buddy. I need you online! IM so happy my step daughter went back to school. Now, the house is empty until 5 pm which means that on my few days when I get home before everyone else,it is quiet! It also means on weekends when the other kids are here, they have HOMEWORK, giving me an excuse not to have to entertain them 24 hours a day for the entire weekend. I can sit and read a magazine while they do homework....a luxury I dont get all summer long.
Okay, im off to work for 6 hours and then my tests...will talk to you soon. Have a good day, and let the grass grow. It will cover the holes which you think you have to fill! (kidding)
hugs,
Nikki
You better be careful girlfriend with that house. Your husband, ex, whatever he is, should be helping you with this stuff. Its still his house, isnt it? Even with him gone at this time? Please dont hurt yourself buddy. I need you online! IM so happy my step daughter went back to school. Now, the house is empty until 5 pm which means that on my few days when I get home before everyone else,it is quiet! It also means on weekends when the other kids are here, they have HOMEWORK, giving me an excuse not to have to entertain them 24 hours a day for the entire weekend. I can sit and read a magazine while they do homework....a luxury I dont get all summer long.
Okay, im off to work for 6 hours and then my tests...will talk to you soon. Have a good day, and let the grass grow. It will cover the holes which you think you have to fill! (kidding)
hugs,
Nikki
duttin
08-29-2007, 03:11 PM
Nikki,
Hope testing went well today.
I have not done diddly squat today,to hot!!!!
Dinner is in crock pot,still missing part of vision in left eye.
Did go to fitness center.
Will check in later.
T
Hope testing went well today.
I have not done diddly squat today,to hot!!!!
Dinner is in crock pot,still missing part of vision in left eye.
Did go to fitness center.
Will check in later.
T
MSNik
08-29-2007, 07:41 PM
Hi girlfriend. Tests are done. It took 2 hours from start to finish, and boy was it a long series of tests. They combine the brain and spine now where I went. Which is good, they dont have to reposition you, but takes an awful long time. Right when I couldnt stand laying there any longer, they pulled me out to inject the contrast and shoved me back in! Fortunately they only did 6 series with contrast...
Its over. Now I get to wait and see what happens on the 7th.
IM sorry to hear about your eye. THats not good. Whats the status with the doctors? Good to hear you are doing the gym thing (ive worked out every single day this week at home, proud of me?:) I am proud of me!) but you still need to give your body a rest..even your eyes....
Im about to go make dinner...Ill check in with ya later.
Hugs,
Nikki
Its over. Now I get to wait and see what happens on the 7th.
IM sorry to hear about your eye. THats not good. Whats the status with the doctors? Good to hear you are doing the gym thing (ive worked out every single day this week at home, proud of me?:) I am proud of me!) but you still need to give your body a rest..even your eyes....
Im about to go make dinner...Ill check in with ya later.
Hugs,
Nikki
MSNik
08-30-2007, 09:55 AM
Hi Nuffs (youll always be my nuffs, not Duttin)
Hope you have a good day. You werent on again last night, so I didnt write..but Im walking out the door and thinking of you....hoping your eyes are feeling better and that you see a doc soon. Keep me posted.
Youll be on my mind today....sending you happy thoughts and good wishes for a pain free day. ok?
Hugs,
Nikki
Hope you have a good day. You werent on again last night, so I didnt write..but Im walking out the door and thinking of you....hoping your eyes are feeling better and that you see a doc soon. Keep me posted.
Youll be on my mind today....sending you happy thoughts and good wishes for a pain free day. ok?
Hugs,
Nikki
duttin
08-30-2007, 02:09 PM
Nikki,
I didn't switch my log in name,it was done for me.
No,I wasn't on,having hard time seeing,Gp's office was flooded out and can't get into new neuro until the end of september.
Having bad fatigue day,didn't even go to gym,it was that or grocery shopping,which was quick and short lived.
Thanks for the happy thoughts and wishes,its nap time,me and the dog.
T
I didn't switch my log in name,it was done for me.
No,I wasn't on,having hard time seeing,Gp's office was flooded out and can't get into new neuro until the end of september.
Having bad fatigue day,didn't even go to gym,it was that or grocery shopping,which was quick and short lived.
Thanks for the happy thoughts and wishes,its nap time,me and the dog.
T
MSNik
08-30-2007, 03:43 PM
I know you didnt switch it, but still , youll always be nuffs to me! :D
I had a lousy day too. Its hot, humid and I didnt know which end was up when I woke up...I did go out and see some accounts. Then, I went to Target, and bought nothing. Then I went to the vitamin shop and spent 100$, then I went to a furniture outlet looking for a printer stand, saw three, couldnt make up my mind and CAME HOME. Thats the kind of day Im having too. The good news is IM officially off until TUesday morning. Me and the cat are about to go lay down on the couch and wait for hubby to come home ....nap time around here, too!
Im really sorry you cant get in sooner...if there is anything you can do, Im sure youll think of it...just try to get as much rest as you can, meantime. Take it easy over the holiday weekend, and try to relax. Ok? Catch up with ya soon.
Nik
I had a lousy day too. Its hot, humid and I didnt know which end was up when I woke up...I did go out and see some accounts. Then, I went to Target, and bought nothing. Then I went to the vitamin shop and spent 100$, then I went to a furniture outlet looking for a printer stand, saw three, couldnt make up my mind and CAME HOME. Thats the kind of day Im having too. The good news is IM officially off until TUesday morning. Me and the cat are about to go lay down on the couch and wait for hubby to come home ....nap time around here, too!
Im really sorry you cant get in sooner...if there is anything you can do, Im sure youll think of it...just try to get as much rest as you can, meantime. Take it easy over the holiday weekend, and try to relax. Ok? Catch up with ya soon.
Nik
duttin
08-30-2007, 07:30 PM
Nikki,
I tried a nap,but my faith 140 wimpy guard dog let the neighbor in and she woke me up.That dog would let a theif in as long as it didn't take her scooby snacks,candy corn or m & m's then she might get fiesty.
I'm trying to take it easy,sending ya cooler weather about 75 and breezy.
I have no energy,trying to clean a little,taking brake from scrubbing kitchen floor.At least the laundry is done.
The lady from the fitness center called to check in on me which was nice.I need a new computer desk,but its gotta wait.Just paid a 123.00$ on a caculator for my son for calculist.Talk about high way robbery.
Well back to the floor,my mom's coming over tomorrow and I gotta at least have some of this mess cleaned up!!!!
I tried a nap,but my faith 140 wimpy guard dog let the neighbor in and she woke me up.That dog would let a theif in as long as it didn't take her scooby snacks,candy corn or m & m's then she might get fiesty.
I'm trying to take it easy,sending ya cooler weather about 75 and breezy.
I have no energy,trying to clean a little,taking brake from scrubbing kitchen floor.At least the laundry is done.
The lady from the fitness center called to check in on me which was nice.I need a new computer desk,but its gotta wait.Just paid a 123.00$ on a caculator for my son for calculist.Talk about high way robbery.
Well back to the floor,my mom's coming over tomorrow and I gotta at least have some of this mess cleaned up!!!!
MSNik
08-30-2007, 09:06 PM
Right there with ya pal. I tried to nap, my phone kept ringing. It appears that the MS society wants someone to hand out literature...funny that they called me and had NO IDEA that I have MS...I found that amusing. They were randomly dialing numbers of people who have made donations....duh.
Then, I took the phone off the hook, but forgot about my cell phone. That rang instead...it was hubby telling me he would be working late. Yeah. I can sleep some more..but NOOOOO. Instead, my stepdaughter calls to tell me she needs a ride home from school. Day 4 and shes missed the bus. Will it ever end?
It was unbelieveably hot and humid today around here...Ill take your 70 degrees send it on! Its supposed to cool down for the weekend and be nice. I can only hope. No plans, maybe spackling the bathroom, but no real plans..I am so happy about that!
I did nothing this week. I feel like I got run over by a truck, Im exhuasted and have no energy..but I did nothing. Maybe there is something to the eclipse theory after all...
Hugs
Nikki
Then, I took the phone off the hook, but forgot about my cell phone. That rang instead...it was hubby telling me he would be working late. Yeah. I can sleep some more..but NOOOOO. Instead, my stepdaughter calls to tell me she needs a ride home from school. Day 4 and shes missed the bus. Will it ever end?
It was unbelieveably hot and humid today around here...Ill take your 70 degrees send it on! Its supposed to cool down for the weekend and be nice. I can only hope. No plans, maybe spackling the bathroom, but no real plans..I am so happy about that!
I did nothing this week. I feel like I got run over by a truck, Im exhuasted and have no energy..but I did nothing. Maybe there is something to the eclipse theory after all...
Hugs
Nikki
duttin
08-30-2007, 11:03 PM
Nikki,
Did ya get the license plate of that truck,it might be the one that ran me over.
I tried sleeping,in came my daughter and her fiance.They definatly were not quite,to be 2o and 21 again.they are so playful.
I finally pushed through my exhaustion and got the down stairs cleaned about half,can't make it upstairs.
The eclipse could have something to do with it,we'll have to wait until february when it occurs again to see.
get some rest
T
Did ya get the license plate of that truck,it might be the one that ran me over.
I tried sleeping,in came my daughter and her fiance.They definatly were not quite,to be 2o and 21 again.they are so playful.
I finally pushed through my exhaustion and got the down stairs cleaned about half,can't make it upstairs.
The eclipse could have something to do with it,we'll have to wait until february when it occurs again to see.
get some rest
T
MSNik
08-31-2007, 09:39 AM
I was thinking the same thing- the next one is Feb 21st? We should make a note of that and watch the posts that week!
Have a good day okay? TRY TO RELAX and take care of the eye...please? I dont want you back in the hosptial over this eye issue...although, Ive said it before and Ill say it again....hosptializing YOU might be the only way to Keep YOU DOWN! :D
Have a good day.
N
Have a good day okay? TRY TO RELAX and take care of the eye...please? I dont want you back in the hosptial over this eye issue...although, Ive said it before and Ill say it again....hosptializing YOU might be the only way to Keep YOU DOWN! :D
Have a good day.
N
duttin
08-31-2007, 04:42 PM
Nikki,
Another day of fatigue and tried to sleep,darn phone kept ringing.I can't seem to get past this fatigue.
Had a state trooper(a friend) do the eye tracking today with his pen,this was at the fitness center.Well I failed.It was all in fun,we were talking about the sobriety test and how many with MS would fail it.
So I got to amuse him.He kept saying can't you see my pen,yea with one eye.
Finally rebif is here,use to come in the morning.The neuro that quit had 2 boxes shipped in case there was a delay in getting into a new neuro.
Hospital at this point is out of the question,it would have to get real extreme,as in both eyes.It would be to hard with the kids in school.
I gotta go to the football game tonight,he dresses varsity,but plays JV.That game is tomorrow morning.
I've gotta get myself organized and alert some how.
I see GP next week.
I stopped all meds except the baclofen and rebif,thinking it was the meds causing the fatigue isn't the meds.I have had this fatigue since I stopped the steroids.I literrally sleep all day for the exception of going to the gym at 8 am1 hour,come home sleep until 2 or 3 up long enough to power clean ,do dinner then back to sleep up an hour or so then back to sleep.How am I do get anything done.
I still have some prednisone I'm gonna see if that helps tomorrow.I don't like the stuff but I'm constantly tired and look like crap!!!
I really hate this disease,I can contend with the body seizures,the spasms,the ON ,these ugly leg braces,the numbness pain,tingling,memory loss,but I can't deal with the fatigue!!!!!Just complaining.
T
Another day of fatigue and tried to sleep,darn phone kept ringing.I can't seem to get past this fatigue.
Had a state trooper(a friend) do the eye tracking today with his pen,this was at the fitness center.Well I failed.It was all in fun,we were talking about the sobriety test and how many with MS would fail it.
So I got to amuse him.He kept saying can't you see my pen,yea with one eye.
Finally rebif is here,use to come in the morning.The neuro that quit had 2 boxes shipped in case there was a delay in getting into a new neuro.
Hospital at this point is out of the question,it would have to get real extreme,as in both eyes.It would be to hard with the kids in school.
I gotta go to the football game tonight,he dresses varsity,but plays JV.That game is tomorrow morning.
I've gotta get myself organized and alert some how.
I see GP next week.
I stopped all meds except the baclofen and rebif,thinking it was the meds causing the fatigue isn't the meds.I have had this fatigue since I stopped the steroids.I literrally sleep all day for the exception of going to the gym at 8 am1 hour,come home sleep until 2 or 3 up long enough to power clean ,do dinner then back to sleep up an hour or so then back to sleep.How am I do get anything done.
I still have some prednisone I'm gonna see if that helps tomorrow.I don't like the stuff but I'm constantly tired and look like crap!!!
I really hate this disease,I can contend with the body seizures,the spasms,the ON ,these ugly leg braces,the numbness pain,tingling,memory loss,but I can't deal with the fatigue!!!!!Just complaining.
T
MSNik
08-31-2007, 08:53 PM
sorry to hear you are having such a rough day. I basically did nothing today. I did manage to get my nails done and do some laundry, but other than that, did nothing! hubby came home from work early, he has 3 days off and orderd chinese, which was nice...now, Im headed back to the couch.
Your story is funny about the eye tracking, but it isnt...you really need to figure out something before you wind up with permenent damage in your eye. Dont know how much prendisone you have left, but it might help the eyes, too...you should try to find out what amount is normally prescribed...I cant believe you have to wait till next week to see your GP. Please try to relax and do less than you normally do until then. Seriously T - you do more in a day then most poeople do in a week. Try to slow down. I admire your drive but you wonder why you are so fatigued? Your body NEVER catches up ...Im glad you are taking cat naps all day..you need to be doing so. Can you take an Ambien or somethng to knock you out tongiht/ Get in a at least 8 hours? Try!
Will check on you this weekend..feel better.
N
Your story is funny about the eye tracking, but it isnt...you really need to figure out something before you wind up with permenent damage in your eye. Dont know how much prendisone you have left, but it might help the eyes, too...you should try to find out what amount is normally prescribed...I cant believe you have to wait till next week to see your GP. Please try to relax and do less than you normally do until then. Seriously T - you do more in a day then most poeople do in a week. Try to slow down. I admire your drive but you wonder why you are so fatigued? Your body NEVER catches up ...Im glad you are taking cat naps all day..you need to be doing so. Can you take an Ambien or somethng to knock you out tongiht/ Get in a at least 8 hours? Try!
Will check on you this weekend..feel better.
N
duttin
09-01-2007, 09:08 AM
Nikki,
I do get 8 hours of sleep and then some.But I wake up tired and have no energy.
The eye thing was funny,this super trooper tried to tell me that nystagmus was 1 in 20 million.I laughed.Told him he needed reeducated.I carry a card in my truck stating I have INO a form of nystagmus.
Went to the football game last night,my little guy(125 lbs 5'8) scored a touch down for the varsity.Now we have JV this morning.Honestly I don't feel like going,but have to.
My feet hurt so bad even to put pressure on them.Honestly I have not done anything but sleep,unless I'm walking in my sleep.
Its getting cooler so I am hoping that will help a bunch!!!!
You have a good weekend.
T
I do get 8 hours of sleep and then some.But I wake up tired and have no energy.
The eye thing was funny,this super trooper tried to tell me that nystagmus was 1 in 20 million.I laughed.Told him he needed reeducated.I carry a card in my truck stating I have INO a form of nystagmus.
Went to the football game last night,my little guy(125 lbs 5'8) scored a touch down for the varsity.Now we have JV this morning.Honestly I don't feel like going,but have to.
My feet hurt so bad even to put pressure on them.Honestly I have not done anything but sleep,unless I'm walking in my sleep.
Its getting cooler so I am hoping that will help a bunch!!!!
You have a good weekend.
T
moore170
09-01-2007, 04:37 PM
I hate to interject on you two (I am not sure why I kept reading) but thought I would let you know that I took LDN for about 9 months and it did nothing for me. My neurologist said that her other patients had the same result. I have read the literature that says it helps but have not come across anyone that has had a positive result. Just thought I would let you know. It is hard to find a compounding apothecary and for me it wasn't worth it.
Candy
Candy
duttin
09-01-2007, 10:38 PM
Candy,
I have a local MS friend and at the time LDN has been wonderful for her.Not all meds work for everybody.She's seeing great results.
I have a local MS friend and at the time LDN has been wonderful for her.Not all meds work for everybody.She's seeing great results.
moore170
09-02-2007, 05:35 PM
I know it is very beneficial for some, that is why I bugged my neurologist to write me a script. Unfortunately it didn't help me.
Candy
Candy
duttin
09-04-2007, 02:07 PM
Nikki,
Hope you had a good and relaxing weekend.
I accomplished nothing other than sporting events.
Vision still stinks!!!!!!!!!The oral prednisone hasn't added much relief.
The fatigue is still lingering and I think that has to be one of the worst symptoms of this disease.
Will check in later,eyes really hurt today.
T
Hope you had a good and relaxing weekend.
I accomplished nothing other than sporting events.
Vision still stinks!!!!!!!!!The oral prednisone hasn't added much relief.
The fatigue is still lingering and I think that has to be one of the worst symptoms of this disease.
Will check in later,eyes really hurt today.
T
MSNik
09-04-2007, 06:07 PM
Hi ya chic. I had a very stressful weekend. Family stuff, my stepfather isnt doing well with his Parkinsons and my whole family came in to see him- so I spent all weekend driving between NJ and pHilly....it was long.
Started working out again though, and I feel alittle bit better overall. At least my abs are coming back!
Im so sorry to hear you arent doing well yet..I had hoped the added prendisone would help you. When is your appt?
Having a really rough week work wise, and will be working 12 hour days for the next 2..and then Friday I get my test results...alittle worried, but at least I have a long weekend off ahead of me!
Ill catch up with you soon.
Hugs,
Nikki
Started working out again though, and I feel alittle bit better overall. At least my abs are coming back!
Im so sorry to hear you arent doing well yet..I had hoped the added prendisone would help you. When is your appt?
Having a really rough week work wise, and will be working 12 hour days for the next 2..and then Friday I get my test results...alittle worried, but at least I have a long weekend off ahead of me!
Ill catch up with you soon.
Hugs,
Nikki
duttin
09-04-2007, 08:04 PM
Nikki,
Sorry to hear that you had a stressful holiday,sad to hear about your step-father.It was good that the whole family could be their.
Did ya get to drive the new car?
No opening appointments at new neuro's yet,did see eye Dr.the optic nerve is pale,recommened steroids.I declined.I just can't do them right now,they sucked the life out of me the last time.
With football and cross country this is my busy time of year.I have to work the concesion stand every saturday this month for football.This will be good,me and another mother with MS.This should be good.
12 hours a day is a long day,hopefully hubby will make or get you dinner the next 2 nights.
Friday think positive,the test results will come out great,remember its not the lesion load,its their locations.
My appointment is Sept.20th just 2 weeks away.I can wait.See GP this week.See what he has to say.
Before old neuro left he made sure all my meds were refillable for the next 12 months even the rebif.Which he made sure his patients were covered.
The heat is to be relentless the next few days.So its inside for me still.I still have not been able to clean up the back yard since the flood.Its been to hot.
I still go to the fitness center,workouts have lessoned for right now.
You relax the next few days ,this heat is coming your way.But next week in the 70's.Thank God for the fall.
T
Sorry to hear that you had a stressful holiday,sad to hear about your step-father.It was good that the whole family could be their.
Did ya get to drive the new car?
No opening appointments at new neuro's yet,did see eye Dr.the optic nerve is pale,recommened steroids.I declined.I just can't do them right now,they sucked the life out of me the last time.
With football and cross country this is my busy time of year.I have to work the concesion stand every saturday this month for football.This will be good,me and another mother with MS.This should be good.
12 hours a day is a long day,hopefully hubby will make or get you dinner the next 2 nights.
Friday think positive,the test results will come out great,remember its not the lesion load,its their locations.
My appointment is Sept.20th just 2 weeks away.I can wait.See GP this week.See what he has to say.
Before old neuro left he made sure all my meds were refillable for the next 12 months even the rebif.Which he made sure his patients were covered.
The heat is to be relentless the next few days.So its inside for me still.I still have not been able to clean up the back yard since the flood.Its been to hot.
I still go to the fitness center,workouts have lessoned for right now.
You relax the next few days ,this heat is coming your way.But next week in the 70's.Thank God for the fall.
T
MSNik
09-05-2007, 08:42 AM
Hows the optical neuritis, girlfriend? Are you feeling any better at all? Decided I better check in with you now, before I leave for work, rather than attempt to do it later. Last night was so rough, I was so exhausted. Im not sure I made any sense. But, I went to bed at 9 pm (with alittle help from my friend Ambien) and I feel 100% today...(for now).
Loved your idea about hubby getting dinner on the table for me. Doubtful, but sounds good in theory. I did manage to get him to promise to grill the main course for me so I didnt have to use the oven. Its true that when you grill out and dont heat up the house it really helps, ya know?
okay, well I really do have to get ready for work. I did a mile on my machine, and an ab workout with my stabilizer ball this morning..and Im ready to rock the day! ;)
Will try my best to check in later...but please T, get some "you" time in today. Take a nap, relax on the couch- avoid the heat.
Hugs
Nikki
Loved your idea about hubby getting dinner on the table for me. Doubtful, but sounds good in theory. I did manage to get him to promise to grill the main course for me so I didnt have to use the oven. Its true that when you grill out and dont heat up the house it really helps, ya know?
okay, well I really do have to get ready for work. I did a mile on my machine, and an ab workout with my stabilizer ball this morning..and Im ready to rock the day! ;)
Will try my best to check in later...but please T, get some "you" time in today. Take a nap, relax on the couch- avoid the heat.
Hugs
Nikki
duttin
09-05-2007, 06:52 PM
Nikki,
Really a rough road the last 2 days.The only thing I can say its gotta get better.
Got no sleep last night,was in terrible pain,meds were not working.
Eye pain has lessoned,the vision still stinks.
I did nothing today.
Will check in later,just no energy right now.
T
Really a rough road the last 2 days.The only thing I can say its gotta get better.
Got no sleep last night,was in terrible pain,meds were not working.
Eye pain has lessoned,the vision still stinks.
I did nothing today.
Will check in later,just no energy right now.
T
MSNik
09-05-2007, 10:23 PM
Im so sorry to hear you arent feeling alot better by now. Good that the pain is lessoning, though...(hope you arent getting used to it!:D ) Your so tough, T, its possible you are just dealing with this like you deal with everything else- by plowing thru it. Thats one thing I always admire about you, nothing stops you.
IM glad you got some rest today..I had another long one- and am heading to bed..but I wanted you to know im thinking of you.
N
IM glad you got some rest today..I had another long one- and am heading to bed..but I wanted you to know im thinking of you.
N
duttin
09-05-2007, 10:48 PM
Nikki,
I still went to the gym this morning,maybe a stupid move,but its always refreshing even with no sleep.
Tonight was fend for yourself night dinner,there was plenty of left overs,egg plant parmisan,stuffed cabbage rolls and left over steak.
My son apparently called his dad this morning and said I was feeling like crap,he came and done all the laundry,dishes,cleaned up the back yard,had wood delivered for fireplaces for winter.Took the garbage out.It sure was a big help.
Sorry to hear that you are working long days,hope hubby is helping.
I'm probably getting use to the pain,that or my pain meds are working.I'm not sure.
I'd just like a few weeks of repreive,which I'm sure many would.Boy I prayed last night that the good Lord would just let the legs go numb,I'm so tired of the constant pain.I know it sounds stupid,but I was at that point at 3 am.
When I see the new neuro we are gonna have a pow-wow over the increased pain and so forth.
Yesterday,my right foot stuck to the carpet,it wouldn't move and down I went and I couldn't get up,right side seemed to seize or froze and I didn't have my cell phone with me.Tried to talk the dog into bringing me the phone I only got a pile of toys and lots of snuggling,after the right side relaxed I could move.
It wasn't a good time for my neuro to leave.
Hope you have a better day tomorrow,I'm slowing down and waiting to see new neuro in 2 weeks.
T
I still went to the gym this morning,maybe a stupid move,but its always refreshing even with no sleep.
Tonight was fend for yourself night dinner,there was plenty of left overs,egg plant parmisan,stuffed cabbage rolls and left over steak.
My son apparently called his dad this morning and said I was feeling like crap,he came and done all the laundry,dishes,cleaned up the back yard,had wood delivered for fireplaces for winter.Took the garbage out.It sure was a big help.
Sorry to hear that you are working long days,hope hubby is helping.
I'm probably getting use to the pain,that or my pain meds are working.I'm not sure.
I'd just like a few weeks of repreive,which I'm sure many would.Boy I prayed last night that the good Lord would just let the legs go numb,I'm so tired of the constant pain.I know it sounds stupid,but I was at that point at 3 am.
When I see the new neuro we are gonna have a pow-wow over the increased pain and so forth.
Yesterday,my right foot stuck to the carpet,it wouldn't move and down I went and I couldn't get up,right side seemed to seize or froze and I didn't have my cell phone with me.Tried to talk the dog into bringing me the phone I only got a pile of toys and lots of snuggling,after the right side relaxed I could move.
It wasn't a good time for my neuro to leave.
Hope you have a better day tomorrow,I'm slowing down and waiting to see new neuro in 2 weeks.
T
MSNik
09-06-2007, 06:32 AM
OH gosh T- the image of you trying to coax a dog into bringing you a phone and intead getting some toys is almost funny, except that it is scary. What you described- Ive never really felt that before. Id have been panicking. Are you okay, now?
Maybe your next project should be finding a dog whisperer to come train your big puppy and teach him to be the service dog he apparently thinks he can be! YOu might start researching it and trying to teach him more yourself...sounds like this dog has potential (and heart).
Im glad to hear that your son and your ???? pitched in. Your son was smart to call his father, and at least the guy came thru and helped in small ways. Hey, we will take those small ways, wont we?
Yeah, your neuro sure picked a lousy time to dissappear on you..im glad that appt isnt far away. I hope you like this new neuro. Your sanity is going to depend on it.
Im off to yet another day of long hours and bosses. Its funny though. Ive stayed with this job, the better part of the year- and my boss and I have come to some unwritten understanding. Things are better at work for the most part. He is working me very hard, and Im really having to sufer thru some long days this week, but things are smoother for some reason. Im not as hysterical about the job. Next month, the boss and I will be going to atlantic city for 3 days, and all the sudden, im his buddy or something...he is making jokes about how "little" work will be done, and how we will try not to lose the per diem gambling each day....silly stuff, but I can tell he is either warming up to me, or appreciating me- something. He hasnt crossed any lines about saying anything suggestive, so I have to believe its just friendship/or appreciation? I dont know.; What bothers me even more is my husband is telling ALL his friends that He will be a free man for 3 days while Im gone. He was invited to go, doesnt want to go- and now all the sudden im wondering why he is so anxious to be on his own. Weve never been apart before. Anyway, getting off topic and starting to realize it. I want you to know before this thread runs out of room, that I really feel for you. BEtween your long, long, relapse and recovery, your battle with the steroids, and your eyes, you have NOT had it easy. SO, no, praying for your legs to go numb isnt stupid. I can understand it. I think the cooler weather is really coming and going to help you. IM sending you prayers and good wishes.
and hugs, lots of hugs.
Nikki
Maybe your next project should be finding a dog whisperer to come train your big puppy and teach him to be the service dog he apparently thinks he can be! YOu might start researching it and trying to teach him more yourself...sounds like this dog has potential (and heart).
Im glad to hear that your son and your ???? pitched in. Your son was smart to call his father, and at least the guy came thru and helped in small ways. Hey, we will take those small ways, wont we?
Yeah, your neuro sure picked a lousy time to dissappear on you..im glad that appt isnt far away. I hope you like this new neuro. Your sanity is going to depend on it.
Im off to yet another day of long hours and bosses. Its funny though. Ive stayed with this job, the better part of the year- and my boss and I have come to some unwritten understanding. Things are better at work for the most part. He is working me very hard, and Im really having to sufer thru some long days this week, but things are smoother for some reason. Im not as hysterical about the job. Next month, the boss and I will be going to atlantic city for 3 days, and all the sudden, im his buddy or something...he is making jokes about how "little" work will be done, and how we will try not to lose the per diem gambling each day....silly stuff, but I can tell he is either warming up to me, or appreciating me- something. He hasnt crossed any lines about saying anything suggestive, so I have to believe its just friendship/or appreciation? I dont know.; What bothers me even more is my husband is telling ALL his friends that He will be a free man for 3 days while Im gone. He was invited to go, doesnt want to go- and now all the sudden im wondering why he is so anxious to be on his own. Weve never been apart before. Anyway, getting off topic and starting to realize it. I want you to know before this thread runs out of room, that I really feel for you. BEtween your long, long, relapse and recovery, your battle with the steroids, and your eyes, you have NOT had it easy. SO, no, praying for your legs to go numb isnt stupid. I can understand it. I think the cooler weather is really coming and going to help you. IM sending you prayers and good wishes.
and hugs, lots of hugs.
Nikki
duttin
09-06-2007, 01:41 PM
Nikki,
Thanks for the prayers.
I keep telling my oversized playful pup,I'm trading her in for a small snippy dog.This one I have lets people in while I'm sleeping,most dogs bark if someone knocks on a door,not this one.
I beleive she is trainable,she has a referee stuffed doggy toy,everytime my son gets out a football she runs and grabs that toy,if you tell her to get the stuffed fish she will.I should work with her on getting the phone,her favorite treats are m&ms and candy corn.
I did train her to give me high 5's and she so gentle not to knock me over.Maybe a winter project.
It was so nice to have the laundry caught up and the outside done,the wood was a god sent,beings thats my main heating in the winter.
I'm so glad that your boss is coming around,its about time and he should be nice to you all the time,he should remember hard workers are hard to come by.
I wouldn't worry about hubby being home alone,he'll kick back watch TV and have tv dinners.When ya get home he'll be glad to see ya and appreciate ya more.
I'm feeling better today,really tired.I went back to taking the quinine,I hate the effects of it,it makes the ringing in my ears worse than normal,but it has releived the night time pain.
Hope ya have a good day,I'm gonna take a nap.
T
Thanks for the prayers.
I keep telling my oversized playful pup,I'm trading her in for a small snippy dog.This one I have lets people in while I'm sleeping,most dogs bark if someone knocks on a door,not this one.
I beleive she is trainable,she has a referee stuffed doggy toy,everytime my son gets out a football she runs and grabs that toy,if you tell her to get the stuffed fish she will.I should work with her on getting the phone,her favorite treats are m&ms and candy corn.
I did train her to give me high 5's and she so gentle not to knock me over.Maybe a winter project.
It was so nice to have the laundry caught up and the outside done,the wood was a god sent,beings thats my main heating in the winter.
I'm so glad that your boss is coming around,its about time and he should be nice to you all the time,he should remember hard workers are hard to come by.
I wouldn't worry about hubby being home alone,he'll kick back watch TV and have tv dinners.When ya get home he'll be glad to see ya and appreciate ya more.
I'm feeling better today,really tired.I went back to taking the quinine,I hate the effects of it,it makes the ringing in my ears worse than normal,but it has releived the night time pain.
Hope ya have a good day,I'm gonna take a nap.
T