Slowing nerve response but no muscle problems
June 23, 2011 at 9:25 am
I saw my neurologist at the U of M yesterday. He wanted to repeat my EMG/NCS since I had my original one at another clinic. Anyway, he is perplexed because my EMG shows that I do have abnormal responses for my nerves but he said everything else is completely normal. No muscle problems, completely normal neurological exam. No loss of reflex…etc. He said that because I do have the elevated protein in my spinal fluid he does concur with the diagnosis of CIDP but he has never seen anyone with only slowing of the nerves but no other damage or problems (yet at least). He said he was going to do some research to see if he can find any other cases like mine. I am currently getting IVIG every three weeks and it seems to be keeping most of my symptoms at bay. I do feel some tingling and crawly sensations in my legs mostly at night after I lay down. I do get fatigued especially after I try to work out or walk for long length. But most days I feel ‘almost’ normal. Of coures i have great anxiety caused by how this has turned my life upside down. The unknown is eating away at me. I think about what if i go down the road that so many of you have gone down and start to deteriate more and more. I am frightened about losing my job if i get worse or not being able to be a good mom for my 7 year old daughter in the way she deserves. Has anyone else had only nerve conduction problems but no other symptoms and did not progress to be worse? My neurologist said he is ‘cautiously’ optomistic about my progression. It did not give me much peace of mind.
AnonymousJune 23, 2011 at 1:26 pm
I think it’s a good sign that you do not have any damage! It means you caught the disease before it could do any permanent damage to your nerves!
[B]It’s a good thing! [/B]
The fact that you can do so well on getting IVIG every 3 weeks is also great! When my daughter was dx’d she needed IVIG 2-3 times a week.
My mantra is “I’m thankful for today & hopeful for tomorrow”. I’ve learned over the last 5 years that I cannot worry about what will happen with Emily’s CIDP in the future. All I know is that today she is good. I hope you can try to apply that to your life too. I know it’s difficult because you have a child though. You just have to believe that everything will be OK! And if you hit a bump in the road then you worry about it when you get there. Enjoy this time of motherhood the best you can. Believe me…it goes WAY too fast!
June 23, 2011 at 2:28 pm
Thank you Kelly. I am trying really hard not to let this CIDP rule or ruin my life. I am trying to go along with everything as much to normal as possible. I just got back from working out on my lunch hour. I joined the YMCA that is only 4 blocks from my work in downtown Mpls. So I have time to walk over and do about 45 minutes of kick boarding and walking back and forth in the pool. It makes me feel good when I am in the water getting exercise. I found I have to skip a day in between as even just 45 minutes of that mild exercise seems to wipe me out. I use to be able to do much more. I am learning to accept my limitations and adjust. I don’t want to agrivate my condition and cause more pain or more degeneration of the nerves. I am very fortunate I guess to have no major damage yet. I will keep my spirits up as much as I can. If only the sun would come out in MN. This summer has been a bummer only in the 50’s and 60’s and some 70’s. Rain, rain, rain and clouds…where is the sun? That would do wonders for my mood. :p
AnonymousJune 23, 2011 at 5:28 pm
When Emily was first dx’d she was really down about it. She was 4 & her whole life completely flipped upside down. I remember her crying & telling me she just wanted her old life back. I know how hard it can be to deal with this.
That’s when I decided that CIDP was NOT going to have us…we have CIDP. (and I say we because it does affect the whole family) I’ve encouraged Emily to live her life as close to normal as possible, which is sounds like you are trying to do too.
For years Emily’s CIDP was up & down. She had so many relapses that I lost count. It took quite a while to get things under control. She did miss out on some normal childhood activities. She just learned how to ride a 2 wheel bike last summer & she’s still not great at turning around on it. She also learned how to tie her shoes last year because she had some issues with fine motor skills. We are just now at the point where I can (sometimes) let my hair down & not worry about her.
My point is to just not rush it. It takes time. I know you want to be able to go to work & work out & do all the things you used to be able to do. But for right now, your MOST important responsibility is to let your body heal. STOP thinking things like ” I am very fortunate I guess to have no major damage yet” and start thinking things like “I am very fortunate that I will NOT have major nerve damage”. I’m telling you…the power of positive thinking helps!
I think working out is good, even if you can only make it 1-2 times a week. It will help your body become stronger but it will also help with anxiety (which any person dealing with chronic health issues has). If you are too tired to make it to the YMCA then just taking a walk on your lunch hour is fine too. Don’t beat yourself up about it. Just keep trying to have a positive attitude & just allow your body to do what it can do.
As far as the weather…I understand that too! I am the kind of person that needs the sun. I deal with depression every February because Michigan winters are long & grey. I’ve been trying to convince my family to move down south but no one is ready to move yet.
June 23, 2011 at 6:15 pm
If you have to push your IVIG treatments out a few weeks will it cause you to have more damage done to your nerves? I am very frustrated because my neurologist is orderiing IVIG every three weeks. But being that it is July I just can’t seem to get one scheduled on my busy calendar until 4 and 1/2 weeks between the last infusion. I don’t know if that will cause problems or if it will be ok to go that long. I have only had three infusions so far since diagnosis. I don’t want to compromise my health but geeze, i have a life and i don’t want to miss out on things I have scheduled already on my weekends. Week days are not an option anymore as I have missed too much time at work and am getting worried to miss any more. I hope this isn’t going to make me have problems down the way if I wait the 5 weeks between instead of three.
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