CIDP since 1994
AnonymousJuly 17, 2006 at 1:30 am
I have been a lurker/poster (mainly a lurker) here for a while. I was diagnosed with GBS in 94, which seemed to be gone after about 1 year. However, every time I had a cold or the flu in the meantime, the fatigue/numbness would return.
During Sept. of 95, I was under a huge amount of stress at work and caught a cold. The same old feelings of fatigue/numbness returned. This time they did not go away and worsened. After approximately 1 week, it occured to me that the GBS might be back, so I went to the doc in a box on a Sunday afternoon. He agreed that the GBS was back and wanted to put me in the hospital immediately. I told him I knew something of what was going on and did not need to be in the hospital, but needed to see a neurologist the next day. He got me an appointment.
The neuro thought I had another case of GBS and did an immediate spinal tap with some nerve conduction testing. The spinal tap showed elevated protein and the nerve test showed some sustantial permanent nerve damage.
She prescribed a couple of IVIG treatments, which did not seem to help much. After about 3 weeks, I went back to work, but struggled all winter to stay there full time. Without and understanding boss, I would most likely been off work from September on.
By the first of March, 06, I was unable to work much due to the fatigue. I went on company disability until the end of May, when it seemed I made a spontaneous recovery. I lasted at work for 6 weeks at which time I could no longer work again due to mainly fatigue.
I had another round of IVIG in October, which did help for about 6 weeks. It was downhill from that point on. I also saw another neuro during the time I was imporved. He re-diagnosed me as having CIDP. He also stated, that he believed that I had most likely had CIDP from the begining. He also stated that I was very lucky not to be worse after 11 years. He suggested Prednezone.
Following my appointment with him, my symptoms worsened, even with 80 mg/day of Prednezone. I was unable to work due to fatigue mainly, but the other symptoms of tingling and numbness were getting much worse. I saw him again in February, at which time he told me there was nothing wrongl with me except being overnedicated (which he prescribed) and out of shape.
Following this visit, I started exercising and was taken of the Prednezone. I went back to work the second week of March this year. I still had trouble making it full time. I could not make it through most days without a nap, and I took several hours a pay period off due to the fatigue. I returned for a followup vist with this quack and told him how much the fatigue was bothering me, and he suggested that I most likely had sleep apnea and that I did not have CIDP, which he diagnosed earlier. I had returned to about 60% of a normal person at this time.
The 3rd week of May, my symptoms started returning. May 31st was the last day I worked. At this point the fatigue is terrible – I sleep 12-15 hours a day. The tingling is all up and down my legs and arms. It is in my abdomen and across my shoulders and chest. It has also progressed into my face and down my neck. I am losing sensation in my feet and hands about midway up my calves and arms. I can no longer feel cold on my feet. I can no longer feel a pin prick on my toes up to about mid arch on my feet. The sensations in my fingers and hands are similar. I do not walk like I used too – I stumble a lot and am much slower. Stairs are a challenge sometimes. I have dropsey. I can’t hold on to things like I used to without extra concentration and effort. I have trouble writing.
Now to the point of the ramble. The doctors will not promise me that I will either recover, they actually say that where I am now will most likely be the way I am for the rest of my life, or that I will get worse. I wonder if those of you who have had a similar course of this evil stuff, can give me some insight into the future?
I deal with the disability the best way I know how. I go from day to day. If I have a good day, I try to enjoy it. On the bad ones, well they are spent on the couch or the bed. At this point I get about 6-7 bad days for every good day.
Not knowing what the future holds is the worst. I am getting slowly but steadily worse at this point. We are going to try IVIG if the insurance will approve, but I don’t know when that will happen. I just wonder if some of you have had a similar case?
Thanks for listening,
AnonymousJuly 17, 2006 at 9:09 am
Greetings from music city. Your story sounds alot like mine in the beginning. glad u posted it, now I don’t have to type. hehe My cidp gets better/worse since 98. If you got some time u can catch up on some of my bull and meet some members of the “Club” here on the forum.
(link deleted by administration)
peace my friend, have a good day…
AnonymousJuly 17, 2006 at 11:37 am
I think the worst is actually not knowing, by that I mean the doc’s not really seeming to know, the change in diagnosis, not knowing if things will get better at some point etc. :confused: Its horrible to think that, if only someone has a similar experience, then it would ease one’s mine, but the reality is that it does. Knowing that there are people out there that are going through the same thing is ‘wonderful’ (for lack of a better word), even though that sounds rather macabre. I hope you find some answers as I know it will help. Best of luck to you.
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