cp760
04-30-2007, 03:56 PM
Hi Everyone: Just wondering from the time you were dx until now - have your symptoms improved or deteriorated? Any feedback would be greatly appreciated. Thanks.
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MSNik
04-30-2007, 04:30 PM
Thats not an answer your going to get which is going to conclusively tell you anything.
MS is like a fingerprint, for each and every person, it is different. No two cases are alike, the disease progresses at a different rate for everyone. For example, I was diagnosed in Sept 2006, started Rebif in Oct 2006. Had 3 major relapses over the first three months on the meds, didnt have another one for the next 3 months and this week, due to the weather change, Im having one which includes gait issues and eye problems...
My best friend from my MS group (also has MS) has a relapse every two years like clockwork and has been on Betaseron for 4 years...in between, she is fine...
For me, I should also mention that having recently had an MRI, it showed aboslutely nothing different, no new legions ( I already have 50+) nothing on the contrast at the time of the MRI...however, less than a week later, I can barely walk unassisted...
See what I mean? You wont get much info off a poll like this...
MS is like a fingerprint, for each and every person, it is different. No two cases are alike, the disease progresses at a different rate for everyone. For example, I was diagnosed in Sept 2006, started Rebif in Oct 2006. Had 3 major relapses over the first three months on the meds, didnt have another one for the next 3 months and this week, due to the weather change, Im having one which includes gait issues and eye problems...
My best friend from my MS group (also has MS) has a relapse every two years like clockwork and has been on Betaseron for 4 years...in between, she is fine...
For me, I should also mention that having recently had an MRI, it showed aboslutely nothing different, no new legions ( I already have 50+) nothing on the contrast at the time of the MRI...however, less than a week later, I can barely walk unassisted...
See what I mean? You wont get much info off a poll like this...
duttin
04-30-2007, 10:50 PM
I agree with MSNIK.
Since being Dx'd and on rebif and solu-medrol infusions my symptoms have fluctuated.
Some symptoms have diminished and new ones have come.
Even though we have a DX,the long list of symptoms can strike at any time.
I had ON in my left eye and have recently developed it in the right and will begin my second round of steroid therapy soon.
For some MS is a roller coaster and others may not have a flair up for years.
Since being Dx'd and on rebif and solu-medrol infusions my symptoms have fluctuated.
Some symptoms have diminished and new ones have come.
Even though we have a DX,the long list of symptoms can strike at any time.
I had ON in my left eye and have recently developed it in the right and will begin my second round of steroid therapy soon.
For some MS is a roller coaster and others may not have a flair up for years.
Stotz814
05-01-2007, 10:49 AM
Yup i agree, in one year i have 5 big relapses, all hospitalized for, my symtoms never go away. Everyday i deal with pain, pins and needles, fatigue, the whole nine. even with being on steriod like i was two weeks ago, didnt clear up my MS at all....i still am having a relapse and i was in the hospital for a week. My ON is still bad and i think will alway be bad, so i guess there is really no way to answer your question...every case of MS is different and everyone feels different things so it is hard to compare. Some cases can be similar but never the same
smithf05
05-02-2007, 10:01 PM
Good day
I'm looking for some answers.
I was dx in Jan.07, one day my hand was numb and tingly. The next day it went up my arm, shoulder and neck. Within two days after I had an MRI.
Seven days later it had traveled all the way to my foot, my whole left side now was numb. Saw the neurologist, he confirmed MS and did the five day solu-medrol IV. Within days the numbness cleared up to my chest. Since the last day of Jan. I have been left with complete numbness in left hand, can't bend fore finger or thumb, also numbness in arm, shoulder and neck. I have terrible stiffness in shoulder and arm, muscle aches and pains from all areas.
The stiffness and sharp pains will flare up all the time.
My first neurologist kept telling me that it will all clear up, could take months.
What is going on ???? and what can I expect ???
I have been on Rebif since mid. Feb. and was given med. for fatigue and pain last week.
thanks in advance
I'm looking for some answers.
I was dx in Jan.07, one day my hand was numb and tingly. The next day it went up my arm, shoulder and neck. Within two days after I had an MRI.
Seven days later it had traveled all the way to my foot, my whole left side now was numb. Saw the neurologist, he confirmed MS and did the five day solu-medrol IV. Within days the numbness cleared up to my chest. Since the last day of Jan. I have been left with complete numbness in left hand, can't bend fore finger or thumb, also numbness in arm, shoulder and neck. I have terrible stiffness in shoulder and arm, muscle aches and pains from all areas.
The stiffness and sharp pains will flare up all the time.
My first neurologist kept telling me that it will all clear up, could take months.
What is going on ???? and what can I expect ???
I have been on Rebif since mid. Feb. and was given med. for fatigue and pain last week.
thanks in advance
Bearygood
05-02-2007, 10:09 PM
smith, I'm sure others with more experience will be able to shed some light on what you can expect. I just wanted to say in general that if you are open to any type of alternative therapies to augment the Rebif, I would highly suggest both massage and acupuncture. I've had success with acupuncture for something a lot weirder and it is much more commonly used for pain and stiffness.
Good luck to you and welcome to the board!
Good luck to you and welcome to the board!
zandvoort
05-03-2007, 11:42 AM
Smith f05-
You are not alone- your progression is very similar to mine but seems faster. It started in September and has not left yet but continues to grow worse. I am still functioning and am on no meds yet. Drs have no clue what is happening. But I do hear from friends with experience and from doctors that even though it has been 8 months, it could all disapear tomorrow. Wouldn't that be wonderful!!!! Best wishes to you for a good outcome.
Deb
You are not alone- your progression is very similar to mine but seems faster. It started in September and has not left yet but continues to grow worse. I am still functioning and am on no meds yet. Drs have no clue what is happening. But I do hear from friends with experience and from doctors that even though it has been 8 months, it could all disapear tomorrow. Wouldn't that be wonderful!!!! Best wishes to you for a good outcome.
Deb
smithf05
05-03-2007, 12:21 PM
Thanks for the input. If you don't mind I would like to wine a little about work.
I do office work, it's a very fast paced and stressful position. I have never had a problem performing my duties. I was out for five weeks at the onset, went back to work for six weeks and wore myself out. I had to leave again three weeks ago. The tightness and pain was too much, that's when my Dr. put me on the fatigue & pain med's. I really don't know where I go from here. I want to work!!!! How do you accept the fact that you can't and worry about how long will it be before you can?
I do office work, it's a very fast paced and stressful position. I have never had a problem performing my duties. I was out for five weeks at the onset, went back to work for six weeks and wore myself out. I had to leave again three weeks ago. The tightness and pain was too much, that's when my Dr. put me on the fatigue & pain med's. I really don't know where I go from here. I want to work!!!! How do you accept the fact that you can't and worry about how long will it be before you can?
MSNik
05-03-2007, 03:14 PM
Hey Smith. Join my club....I too, started out with very similar problems and was diagnosed almost as quickly...my neuro and MS specialist both agreed to put me on Rebif as well and I started last September. I have bad news, my hand has never gotten better. Some of my arm "came back", however, my fingers and especially into the wrist- nothing. Its the same as it was..
The good news is that you get used to it. You honestly, start to forget, except on days when it hurts more than others, that it exists. I swear to you, you deal with it. There is always hope that it will come back and unfortuantely, no one can tell you if it will or wont. I wish I could tell you to give it time, but in all honesty, time may or may not change things...
Its really good that you started the Rebif though, and in case you werent told, it does take a full 6 months for that to be in your system and to really do what its supposed to...so, since you just started it 2 months ago (and they dont consider it "started" until you are at the full strenth, the whole 44 mgs- so really you have only been on it a month, right??) you have plenty of time to tell if this is going to work for you...I hope you arent having to many symtoms from the shots..I had horrible ones, but after about 4 months they went away completely!
As for what Bearygood said, accupuncture is a funny thing. It helps some people, but others (like me) get no relief. Its certainly worth trying. Just make sure you find a certified accupuncturist!! As for massage, check with your doctor. Mine has STRICTLY forbid any type of massage, as manipulation of the nerves can do permanent damage. Just check first. It might help, but you dont want to do it if he feels that where your pain is, is risky.
Good luck.
Nikki
The good news is that you get used to it. You honestly, start to forget, except on days when it hurts more than others, that it exists. I swear to you, you deal with it. There is always hope that it will come back and unfortuantely, no one can tell you if it will or wont. I wish I could tell you to give it time, but in all honesty, time may or may not change things...
Its really good that you started the Rebif though, and in case you werent told, it does take a full 6 months for that to be in your system and to really do what its supposed to...so, since you just started it 2 months ago (and they dont consider it "started" until you are at the full strenth, the whole 44 mgs- so really you have only been on it a month, right??) you have plenty of time to tell if this is going to work for you...I hope you arent having to many symtoms from the shots..I had horrible ones, but after about 4 months they went away completely!
As for what Bearygood said, accupuncture is a funny thing. It helps some people, but others (like me) get no relief. Its certainly worth trying. Just make sure you find a certified accupuncturist!! As for massage, check with your doctor. Mine has STRICTLY forbid any type of massage, as manipulation of the nerves can do permanent damage. Just check first. It might help, but you dont want to do it if he feels that where your pain is, is risky.
Good luck.
Nikki
smithf05
05-03-2007, 03:27 PM
I have had no problems at all with Rebif, only the flu symptom a few times.
Does anyone have any advice about how to continue work with these symptoms?
thanks
Does anyone have any advice about how to continue work with these symptoms?
thanks
zandvoort
05-03-2007, 05:08 PM
working..... Any chance you can get more flexible time or work from home? I reduced my work hours back to 40 from about 48-50 and it has helped. I come into work 1.5 hours later than I used to because I am the worst in the mornings. That extra 1.5 hrs makes a huge difference for me in driving to work and trying to concentrate when I get there. I also leave at a more reasonable time as well. Luckily, my employer is accomodating and although as a project manager, my work is all about working with people, there are times when I have to write reports and analyze data that I can do at home and that is allowed. My employer has been good about me taking some time to cut back to the necessities of my job though it is a humbling experience for me as I am type A and always there for the extra work. I have not had to totally take time off yet, that might change things if I had to do what you did. I expect I will go part time for a while once a couple of my projects are completed this summer or if I have to adjust to therapy. If your employer gives you a hard time, I would research your rights on the web and contact your local MS chapter to make sure you know your rights in this situation.
Hope that helps you to adjust. I know how hard it is to scale back and be just a regular Joe if you are used to over-achieving, but it is critical.
Best wishes
Hope that helps you to adjust. I know how hard it is to scale back and be just a regular Joe if you are used to over-achieving, but it is critical.
Best wishes
MSNik
05-04-2007, 09:11 AM
Hi Smith, as a Rebif user, I will tell you the BEST thing I found for the flu-like symtoms, and mine have totally gone away after 4 months on it, is Aleve. Because ALeve works for 12 hours...taking it an hour or hour and a half befor the injection, and taking the injection after dinner (and drinking water all day to stay hydrated, and I mean 2 or 3 water bottles a day) REALLY HELPS. If I take the Aleve at say 5 pm, eat dinner, and do my shot around 6:30 pm or 7, go to bed by 10 ish..Im usually okay. I can sleep thru the night comfortably and wake up good.
Mostly why you are so sluggish in the AM isnt the shot as much as the fact that you arent sleeping well, due to the flu-like symtoms...I can relate, used to spend an hour on the bathroom floor wishing I could either puke or die..and never did either of them...then, BOOM. One day a nurse told me about Aleve, it worked..and a few weeks later, no more effects at all. I even forgot to take it one night before my shot, and didnt have side effects..to me, that was impressive!
Good luck,
Nikki
Mostly why you are so sluggish in the AM isnt the shot as much as the fact that you arent sleeping well, due to the flu-like symtoms...I can relate, used to spend an hour on the bathroom floor wishing I could either puke or die..and never did either of them...then, BOOM. One day a nurse told me about Aleve, it worked..and a few weeks later, no more effects at all. I even forgot to take it one night before my shot, and didnt have side effects..to me, that was impressive!
Good luck,
Nikki
smithf05
05-04-2007, 12:08 PM
I feel like I need to rephrase my reply in regards to work. Work is my no. 1 concern right now. Why is it not my health? I'm not sure why, maybe because this is all new to me and I have not accepted the disease, I feel like I should be able to do what I want to and eventually it will go away and everything will be ok.
I'm in sales, phone, computer, and shuffeling paper. This is not physical labor but a lot of activity. What happened was, when I returned to work after the onset I hit the ground running. I didn't look back, I ended up fooling myself , my family and my employer. To this day, when any activity is excelerated I stiffen up, cramp, hurt and the numbness in my hand gets to the point to where I can't feel anything. I would come home from work and collapse and try to rest up for the next day. Even weekends were resting periods knowing Monday would come.
I left work finally knowing it wasen't working. My Dr. prescribed Provigil for fatigue. This has worked well, I feel more alert and I'm not tired all the time. He also prescribed Gabapentin for pain. I have not really seen any huge improvemt here. I constantly have stiffness, cramping and pain in my shoulder. I get sharp nerv pains in my arm and hand.
I know what your going to say, "this is something you and your doctor need to work on". But, I'm looking for some real life stories on what did you do and how did you deal with it!
I thank all that have shared your comments and advise. I have gained some good info. that will help with my next visit.
richard
I'm in sales, phone, computer, and shuffeling paper. This is not physical labor but a lot of activity. What happened was, when I returned to work after the onset I hit the ground running. I didn't look back, I ended up fooling myself , my family and my employer. To this day, when any activity is excelerated I stiffen up, cramp, hurt and the numbness in my hand gets to the point to where I can't feel anything. I would come home from work and collapse and try to rest up for the next day. Even weekends were resting periods knowing Monday would come.
I left work finally knowing it wasen't working. My Dr. prescribed Provigil for fatigue. This has worked well, I feel more alert and I'm not tired all the time. He also prescribed Gabapentin for pain. I have not really seen any huge improvemt here. I constantly have stiffness, cramping and pain in my shoulder. I get sharp nerv pains in my arm and hand.
I know what your going to say, "this is something you and your doctor need to work on". But, I'm looking for some real life stories on what did you do and how did you deal with it!
I thank all that have shared your comments and advise. I have gained some good info. that will help with my next visit.
richard
MSNik
05-04-2007, 01:39 PM
Work, until you cannot work anymore. Ask for things which you actually might get. The ability to take ten minute breaks during the day when needed, and shortening your lunch hour to a half....using egomatic chairs, desks, keyboards, things which help your posture and stiffness will help- theres a really good article in MSonline last month about the stuff you can legally ask for. My best advice was the first line: work until you cannot work any longer. Dont be in denial...you cant be. And, take all the breaks and downtime you can allow yourself. You are already resting up on weekends and after work, thats important, but DO NOT overdo it, you cant rest up from too much exertion. Youll only relapse.
Im in sales- outside sales, I see 8-10 vendors a day and drive up to 200 miles...somedays, IT KILLS ME. What I had to do was cut my hours back to 30 hours a week. I only work 3 days a week on the road, spend another half day at the office making calls, setting up appointments and turning in paperwork...and as long as I see those 30 accounts each week, sometimes I actually get my work done in 2 days! But, on that 5th day, I am vertical on the couch! I used to cook, clean, do laundry, etc..not anymore. Now, I have learned to take time for me.
Good luck.
n
Im in sales- outside sales, I see 8-10 vendors a day and drive up to 200 miles...somedays, IT KILLS ME. What I had to do was cut my hours back to 30 hours a week. I only work 3 days a week on the road, spend another half day at the office making calls, setting up appointments and turning in paperwork...and as long as I see those 30 accounts each week, sometimes I actually get my work done in 2 days! But, on that 5th day, I am vertical on the couch! I used to cook, clean, do laundry, etc..not anymore. Now, I have learned to take time for me.
Good luck.
n