Hi Matt,
I can feel your frustration, we have been there. You mentioned that your last ncv/emg was a year ago, would it be possible to get another and have it done by the same neuro using the same measurements, testing the same nerves? Bring your old report in case they do not pull the old one. In the event you cannot get the same neuro to administer another ncv/emg, at least you can supply the old test so it can be replicated. If you again get another ncv/emg that reads the same, it would at least put to rest that there is no further demylienation and you would no that in fact it is residuals that you are left with. At least then you could focus on pain meds or maybe pt. Are you on any meds? You mentioned a muscle biopsy with wasting happening, did they do a skin or nerve biopsy? Have all the basics been tested such as lymes, heavy metals, cmt?

Hi Matt: I have done a lot of research on residuals and one of the interesting things is that residual fatigue does not correlate with nerve conduction studies, which is to say, the ncs results may all be normal and you can still have residuals. As far as I know there is no objective way to prove residuals-they are really based on subjective reports, which is why doctors have trouble with them. There have been some studies demonstrating the existence of residuals but no really good way to measure them. My doctor told me not to bother with the nerve conduction study as the results would really show nothing, unless one feel they are getting worse. I have listed the research studies I encountered in another post if you want to check them out. Jeff

Matt,

In the GBS/CIDP foundation’s handbook that they sent me, it talks about Pain and Fatigue as residuals, but none of the other symptoms that a lot of people on here talk about. I am interested in this too. Let me know if you find out anything. Maybe you could call the main office and see if they have any literature or info.

Hi Kim glad to Hello.How is your Son? I hope Coping
Kind Regards
Paul

Hi there Kim, how is Adam doing??

Jerimy

Linda, many of us here have talked about fatigue. I have it too, almost constantly. I think it is because our body is reacting to the constant inflammation caused by CIDP as if it was an infection.

I also have backaches off and on. It was especially bad while I was confined to a wheel chair because of a fractured knee. Once I got out and started PT last week, the backache is almost gone. One of the exercises I do at home is “Bridging”. I am on a flat surface, head on a pillow, legs pulled toward me. I slowly raise my buttocks keeping the stomach tight. I hold it for 5 seconds and repeat this 10-15 times. Maybe this might help you.

[IMG]http://www.bluemarble.de/forum/bridging.jpg[/IMG]

The other day while staying at my daughter’s in Denver during my monthly IVIG, I looked at some chapters in one of her emergency medical books. She is an emergency doc. It said about backaches that there could be many different causes and that they go away by themselves in 80% of all cases within a few weeks. Unless the cause is obvious the physician should just wait and see. That might explain the attitude you encountered.

Welcome. I have CIDP and have major problems with fatigue. Just normal activity like shopping or house work can really wipe me out. When my IVIG is wearing off (and before I was treated), I can get exhausted just getting ready to go to work. I’ve learned to accept that I can’t do as much as I used to, and try to rest between tasks. When I really over-do it, I pay the price — sometimes for the entire next day.

When I mention the persistent fatigue to both my regular doctor and neuro, neither react like it’s CIDP-related. But I think it is based on how bad it is/was before the IVIG infusions. I also don’t sleep well — haven’t for years — so my docs want to test me for sleep apnea. Apparently people with neuromuscular disorders are more prone to it than “normal” people, but I’m not up for it just yet. Maybe some day.

Take care and rest, rest, rest!
Caryn

I have the fatigue and have pretty much learned to pace myself. But if I stand for too long at the store reading a lable or stand in the checkout line too long I really notice my back starts to really hurt. Doing my exercises at first in the rehab pool after being instructions on how to do them correctly on the table. That helped my back alot. The strenght is coming slowly back in to my shoulders, legs and the back, hips and abs are the last to come back. I still have some numbness in the pelvis area and am just able to feel those muscles actually working and tightening. Before I did the exercises but they just did not feel strong, now I can actually fell them working. Just like in the “bridge” I am able to raise off the floor higher. Able to stand and get up in the middle of the room without the help of furniture. Yoga has really worked all areas and caught the areas that needed rehab done on them to strenghten them. I have combined all my exercise teams to work toward balance, strength, range of motion and staminia is coming back slowly. Breathing and getting the oxygen to those muscles seems to be just an easy thing but I actually had to work hard for lung capisity to go under water and be able to work out without stopping. Been a long haul but things are finally coming together. Keep up the good work and don’t give up! Stay possitive! Singing and dancing are great for you too. Most of our favorite songs only last for 3 minutes. 3 minutes here and 3 minutes there adds up over a week!

Welcome back Tracy!:) We’ll be delighted for whatever you can share with us. Please give us an update on your dad. Thanks.

Greetings Tracy,

I may be one of those that you used to see here, I’ve been around a while. But, this web site had a major crash last summer so everyone had to re-register – that is why you see the dates of being a member since May 2006 in most cases.

Anyway, I’m glad you’ve popped back in and glad to hear at least your Dad is doing okay as he can be. I’m now officially 10 years post and looking back, I feel I had some improvement around 3-4 years. However, with age catching up with me (I’ll be 50 this year) I am slowing down again. Sounds like your Dad has a pretty good social life compared to mine. Where do you all live???

Take care and keep posting!

So glad we’re back up and running. I’ve missed you all — seeing all your posts and getting all your support.

YEA!!!!!!!!!:) 🙂 🙂

Julia,
It is so good to see so many finding their way back to the forum. Wow, 45 minutes on a treadmil, you must be doing great! I can only dream about doing something like that. Keep up the great health!
Pam

[QUOTE=Julia]
Nothing new here…still have CIDP!!!! Still doing well with IVIG.
I am now walking everyday on my treadmill for 45 minutes…feeling really good. [/QUOTE]
Yes, I missed it, too. Changed from [b]nchoffmann[/b] to [b]norb[/b] Treadmill? How great. Ours is starting to rust 😮 Got my 2006 model burgandy “Ferrari” rollator a few months ago. Helps a lot. Otherwise, nothing new here either. Still have CIDP, stiil progressing, IVIG still very iffy, Prednisone was a bust. But … still in pretty good spirits – most of the time.

Hi Julia!

I like your name…mine’s Julie 😎

I’ve been reading this website for years, but haven’t written in awhile due to registration problems. It seems things are working well now.

I wanted to encourge you to keep on exercising, girl! You’re doing great!

When I came down with CIDP I came close to not making it. They couldn’t figure out what was wrong with me and my body was shutting down quickly. I couldn’t even open my eyes.

Fast forwarded four years…I’m now working out at the gym five times a week for a hour and half! I do an hour cardio and half hour weights. When I first started I was embarassed because people would look at me like “what the heck is wrong with her” I could hardly lift three pounds.

My nerologist told me not to go to the gym at first, but then he saw how strong I was getting…now he encourges me to keep at it.

I gained 40 pounds from Predisone. I’ve been able to get 20 of it off…but no more. At least I’m on the right track.

I hope you’re feeling better everyday. You sound like a very nice person!

Take care & Good luck! :p

WElcome Back!
I too missed the familar blue forums with all the great advice and support.

And 45 minutes on the treadmill? Wow!!!!! You’ll be doing the Boston marathon before you know it! Keep going – you are inspiring. Inspiring enough that I too need to pick up on the exercising. 45 minutes…very cool!!

Peace,
Mary

Glad your back Julia and congrats on being able to do 45 minutes on the treadmill. Take care of yourself.

Jerimy

Julie,
Congrats on losing half of your steroid weight. I gained 80# on steroids (solumedrol infusions weekly) between Nov of 2002 & Feb of 2004. I love how they tell you it all comes right off after you are off of steroids, not! I have been working on it on & off since Jan of 2005 & have managed to take off 44# so far. I only want to take off another 10-15#, as I had lost almost 30# the first three months when I first got sick. I see the pics of me from the summer of 2002 & wish I were that thin again (not really), but never want to be that sick again.
Pam

[quote=Julia]Greetings,

……It is hard to be 35 and living with CIDP and realizing you may never be free of it…[/quote]

I am 36 Julia and I definetely know what you mean 🙁

Jerimy