How long did you have symptoms?
AnonymousMarch 12, 2009 at 11:40 am
I am really curious about how long many of you experienced symptoms of CIDP before you got a diagnosis.
My current neuromuscular issues are undiagnosed, and to keep it short I am not disabled but have subjective weakness, muscle slimming (real atrophy??? don’t know), among other things like twitches, minor cramping, minor coordination issues, etc. and can do most all of the things I normally do. I should also mention I have had no sensory issues other than some minor burning feeling in my feet and hands from time to time.
I can trace the current symptoms back to a small noticeable beginning 7 years ago, so it has slowly progressed. I’m certainly concerned about a MND, but was “cleared” of that just a month ago.
So, has anyone with CIDP had symptoms for that long, or more than a few months before dx?
March 12, 2009 at 12:27 pm
My symptoms began in January of 2008. My EMG diagnosis in May of 2008 was CIDP. My first neurologist dismissed this and gave me an incomplete diagnosis of vitamin B-12 deficiency and treated me for that. I continued to go downhill until I went to neurologist #2 in July 2008 who correctly diagnosed me with CIDP and began treatments. I have steadily made improvements since August 2008.
AnonymousMarch 12, 2009 at 1:53 pm
13 years before diagnosis.
First 8 years various MD’s and 2 Neuros told me my symptoms (burning, tingling, pain, weakness, etc) was in my head. Then got diagnosed with fibromyalgia with current Dr which at least allowed my Dr to give me muscle relaxants and xanax for my flareups (pain meds didn’t touch my pain). I convinced him that I had a different problem which thankfully when treated got rid of my pain totally and I believe that this issue being untreated for years was actually what gave me CIDP. Thru this time I always told my Dr that I thought that something else was wrong with me but like the other Drs I had over the years he didn’t bother looking farther than his original diagnosis. Finally 5.5 years after his fibro diagnosis, I got hit super hard with my current flareup and then went to 2 more neuros…this time with a diagnosis.
My diagnosis is not formal yet although my health history, current condition scream CIDP. Unfortunately my EMG came back inconclusive and LP was negative hence my Dr can not give absolute diagnosis to insurance company. Neuro is fairly convinced that I have CIDP but is treating me with IVIg to hopefully give me a firm diagnosis.
AnonymousMarch 12, 2009 at 3:41 pm
My symptoms first began somewhere is between 1992 and 1995. They progressed very slowly. I was finally diagnosed in December of 2005 at the University of Alabama at Birmingham. The progression has been very slow. I have been on IVIg once every 30 days. This has seemed to slow the progression.
I cannot be exactly certain when I first noticed the onset. It was very subtle.
March 12, 2009 at 9:45 pm
Kevie was 3 months from first symptoms to a correct diagnosis. Good luck with your quest.
Dawn Kevies mom
AnonymousMarch 13, 2009 at 8:25 pm
Similar to GaryO, my symptoms started in Aug. ’08, I was diagnosed in Nov. ’08 and received IVIG in Dec. ’08. My progress has been inspiring, as I can walk unassisted and use stairs again. I’ll probably not be able to run/jog, but who wants to run after a golf ball! On a serious note, from what I read on the forum there appears to be a (logical) connection between speed of diagnosis and treatment and the extent of permanent nerve damage.
Hope this helps.
AnonymousMarch 14, 2009 at 4:52 am
I’ll back you up on that one Paul. It took more than two years for me to get a diagnosis and in that time I didn’t receive treatment beyond what it took to get me out of the hospital, ten days of IVIg. Therefore I had damage done in those two years that could have been prevented with an earlier diagnosis. On the other hand, it’s a rare disease and apparently I have a rare form of this rare disease so I don’t resent the lack of a firm diagnosis from previous doctors. And I’m not beating myself up for not pushing harder because I saw 14 different doctors during that period, had countless scans, tests etc. I think we all did as much as we could to figure out what was going on but I just didn’t fit with anything they had heard of. Of course you can imagine my relief when within five minutes of meeting my Hopkins doctor he said “I know what you have.” I think I might have cried. 😉
AnonymousMarch 14, 2009 at 6:31 am
I started experiencing muscle strength lose in September ’07. I was finally diagnosed March ’08 and started IVIg April ’08. My decline was slow but steady. At first I was told by a physical therapist (a relative) we lose muscle strength as we get older. So, I waited two months before seeing my doctor. Initially they ran blood tests and my liver counts (ALT,AST were high) so we went down that road. When everything about my liver seemed OK, I was sent to my first Neurologist. After the 1 1/2 hour, very extensive, EMG he said he was 99% sure I had Myathenia Gravis. At the time I was just relieved it was not ALS. After the labs did not confirm, he said he did not know and referred me to a second Neurologist. The second Neurologist did about a 20 minute EMG and said he thought I had CIDP. I had MRI’s and a lumbar puncture which came back at 94. I then had my first round of IVIG and made some improvement. The improvement with the IVIG became part of the diagnosis. The next two months I had a reduced amount of IVIG. I stayed stable but did not improve. We then went back to the load dose of IVIG and I have continued on that every three weeks. In the beginning I had continued to try to work. When I really made progress was when I worked part time for three months and took naps almost every day. My naps were anywhere from 2-4 hours and I had no trouble sleeping at night. I think your body really needs to heal. I am very functional now but not back to normal. I still do not have all my body strength and my balance seems to be off — not all muscles working. I tripped the other day and fell hard. I can not recover if I lose my balance. It is rainy and cold here right now and my muscles hurt. Normally I have very little pain. I too think it is how quick you stop the damage and from what I have read, six months seems to be the key.
AnonymousMarch 16, 2009 at 1:57 pm
Wow, huge swings from symptom onset to diagnosis.
Thanks for the replies – I guess the “longer” symptom folks have given me some more hope that this is something like CIDP instead of *LS.
Did any of you have muscle slimming or atrophy with your weakness?
Thanks again for your help.
AnonymousMarch 16, 2009 at 2:24 pm
My symptoms began at least 5 or 6 mos before diagnosis. I had back issues and two epidural injections. My first dr told me to do calf muscle exercise.
I had a loading dose of IVIG…the correct amt but the wrong nurse to infuse it so I had a bad reaction on day four. The menningitis headache.
The second load went well. I’ve had subsequent ivig’s since with all different amts. It depends on how aggressive a dr wants to be or how much knowlege he or she has about the disease. I’m still progressing but still walking. Very slow progression.
I’d like to believe that the correct amt of ivig given regularly would help me…I’m working on that.
I am almost three years into this. I went from not feeling my toes on one foot to not moving or feeling any of them, drop foot, numb from the knees down and hands numb in most areas with lots of weakness. I’ve been fitted for and have an AFO that I dont wear and I have a cane. I’m 38 yrs old.
And, I do have atrophy in both ankles, feet, and hands.
AnonymousMarch 16, 2009 at 2:29 pm
Speaking only for myself, I have experienced some muscle loss — but I can regain muscle. What causes me greater concern is the muscle/ligament “tightening”. Apparently, CIDP causes a loss of flexibility due to tight tendons. I’ve been stretching for a few weeks now and still don’t feel any “looser”. Do others have this experience? Will it always be this way?
AnonymousMarch 16, 2009 at 6:50 pm
I like the description — muscle slimming. Yes, I experienced that. In the past three months my muscles have been filling out my skin. I do not have my original strength yet. When I fell last week, I could not catch myself. But at my worst, I could not take the hanger off the rod in the closet, could not raise my arms over my shoulder heigth. My husband had to help me dress. When I dried my hair I had to prop up the hair dryer and basically lay my head on the vanity. I have made a lot of progress!! When I feel “rock solid” (as my doctor described it) we are going to start extending the length of time between infusions. I am currently at every three weeks. We will begin extending a week and see where it goes. The dosage amount is to stay the same, just the interval adjusted. I think I am about there. I am ready to see if I could eventually get off the IVIG treatments. This improvement has taken a full year. I have been told and read that at 18 months of treatments, most people have improved as much as they ever will. Even if I do not improve more in the next six months, I can handle it, I am functional. But, I plan on getting back to normal!!!!!
AnonymousMarch 18, 2009 at 12:41 am
I first had symptoms in July or August of 1989. I was diagnosed in late 1999.
My initial symptoms were numbness in the corners of my big toes. I attributed it to back pain, which I have had surgery for (later on). A “prestigious” hospital diagnosed a peripheral neuropathy, but not any specific peripheral neuropathy. After six months, the Dr. said it was stress and alcohol. I was told to stop drinking the four beers a day, five days a week AND to take more time off.
Needless to say HE WAS WRONG. He didn’t have the guts to say “I don’t know what it is.”
Five years later I had some tests repeated, and it got a little worse. Five years after that I was having some gait problems and some fatigue issues. Five years after that I was put on disability.
I lost my job and after getting on disability I rested more and the progression of the neuropathy has slowed, the pain has increased, my fatigue comes quicker, I can do less and spend half my time in a wheelchair.
I guess that about covers it in a nutshell.
AnonymousMarch 18, 2009 at 12:46 am
Remember that everybody is a little different. But yes, I have troubles with tendon tightening, muscle drawing up and then resutling cramps etc.
Can you beat it, Yes, I think so, the muscle part. Keep on stretching. I still do. It has gotten worse for me over a 15 year period, ut I think it would be a LOT WORSE if I didn’t stretch as much as I do. The next key is to keep your activity within thw safe zone.
If you over do it and have to spend three or four days in bed, you will stiffen up and lose some of the headway you have made. So take care of yourself and keep on doing what you can do.
Use it or lose it.
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