Hi just found this website today
AnonymousJune 15, 2006 at 10:56 am
Hi, I have had CIDP for 3 years. Or should I say I was diagnosed 3 years ago. Before that doctors just told me to quit complaining about akes and pains. When you get old things start hurting. So I probably had this for 10 or 12 years mildly. I was buying new shoes every month thinking that was the problem. Now I’ve been off work since April and the doctors are saying I probably won’t be able to go back. Not just because of the CIDP but I had a nervous break down in April also. Stress at the job, stress with my grown daughter and stress with this darn desease. I’ve had 3 IVIG treatments and only the first one worked for about 3 weeks. The second one almost killed me. I had a red streak going up my arm where the needle was and swelling and I couldn’t move my arms. They convinced me to do it one more time saying I could have gotten a bad batch of IVIG and the 3rd time nothing happened at all. No releaf. I’m sorry, sometimes I think the doctors just want the $12,000 and don’t care if it works or not. I can’t deal with this any more and to think I have to face it for 20 more years is unbearable. I am seeing a shrink once a week. Between her and the big psy. they are changing depression meds. Reading your messages I’m not seeing anyone else that has gotten the depression. I also have jerking motions in my legs, arms, torso, and head. These are sporatic but constent all day. It’s not pain its my leg will move then a minute or less my arm will move then my foot then my head. I have told the doctor but he doesn’t seem concerned. Has anyone had these with their CIDP or am I going crazy and have CIDP.
AnonymousJune 15, 2006 at 2:35 pm
🙂 Hello Karen!
Reading you short summary of your trials and tribulations sure rings a lot of bells with me.
My GP also told me there were so many aches and pains people just had to endure when my legs had become unbearable painful all the time and the rest of my body now and then.
The trigger of my illness, I’m quite convinced, is STRESS, among other factors because of an immunologist’s explanation of how STRESS influences the immune system. I have never really been depressed, but it is far from uncommon among people with the related illnesses GBS\CIDP\PDN. My stress was living with anxiety for quite a number of years.
You don’t mention seeing a neurologist on a regular basis, but try to get a doctor test your IgM level. IgM is an antigen, a part of your immune system, and as you probably know, all the above-mentioned illnesses are auto immune diseases. I have the PDN variety which is caused by a flaw in the IgM combined with an over-production of it. IVIG does not help much for this condition, and since stress seems to play an important role in the development of your disease, I think the IgM question might be something to look into.
I’m having jerking motions too, but of a different kind from yours. Mine are called “intention tremors”, and I have them in all parts of my upper limbs when I use them, not when they are relaxed. Perhaps others recognise the kind of jerks that you suffer from.
I received Rituxan treatment a year ago, and have had a slow but fairly steady improvement since then.
I and many others will be happy to give you all the answers we are capable of, so keep on posting.
Hope this may be of any help and comfort, Karen!;)
All the best from
AnonymousJune 15, 2006 at 9:53 pm
Karen ; Depression is not uncommon around here. My guess is the majority of us are on one type of anti-depressant or another. I’ve had to have them off and on ( mostly on) since I was diagnosed. They really do make a world of difference. Keep talking here too… It makes you feel less crazy because we do know what its like.:)
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