AnonymousSeptember 1, 2006 at 6:47 pm
I was diagnosed with CIDP 6 years ago. From August to November I slowly lost feeling in my extremities. I lost my sense of balance. Walking was very difficult and very painful. Without feeling in my arms, it was almost impossible to feed myself. Wearing shoes was very painful. My hands were shaking so bad I thought I had parkinson’s disease on top of what I thought was MS. I lost all reflexes in my legs, feet, and arms. After the usual studies, muscle, nerve conduction, ct scan and including the spinal tap, I was diagnosed with CIDP and immediately put on Prednisone 80mgs. After a week or so, I could tell it was helping. After about 3 weeks I was able to walk fairly well without my walker. My neurologist didn’t trust IVIG’s. After 4 months of 80mgs. of prednisone I slowly tapered down and added cellcept 2gms daily. Three years ago a different neurologist started me on IVIG’s and it was great. I stayed on the 2 gms of cellcept until a year ago and was doing OK, using a cane and could walk fairly well without it. I would have weeks with numbness and pain pretty bad and then a few weeks when it was not so bad. Right after the IVIG, I was good for a short while. My reflexes in my legs came back after I had been on the predisone for about 6 months and in my arms after about 3 years. My husband is retired military and every 2-3 years we get a new neurologist. The one I have now is the 3rd military one I’ve seen. I also saw two who were civilian neurologist who diagnosed me with CIDP. This new doctor who didn’t see me until a few months ago, told me that people with CIDP NEVER get their reflexes back so that would mean I was mis-diagnosed back in 2000. Every neurologist I’ve seen has checked my reflexes. They have commented on the fact that I had them in my legs, my arms have been faint until recently. The reflexes in my legs are strong! He thinks I had a severe vitamin B-12 deficiency. Any CIDP patients with reflexes?? Thanks, Susie27
AnonymousSeptember 1, 2006 at 8:31 pm
Don’t you just love it when some new “genius” sees you for the first time and blythly dismisses everything that has come before? I feel like telling them to read my file, learn something about my disease, and when they have become informed enough about my case to talk to me intelligently, call me.
Best wishes for a better neurologist next time.
AnonymousSeptember 1, 2006 at 8:46 pm
I lost my reflexes in the beginning when they thought I had GBS until I relapsed and they changed my dx to CIDP. My reflexes returned when I was put on IVIG…I relapsed and lost my reflexes again about 6 mos after my dx of CIDP when they tried to take me off IVIG, when I went back onto IVIG I again regained my reflexes…which I still have today after 3 years. So I know in my case I can lose and gain my reflexes back and have a dx of CIDP.
Hope this helps.
AnonymousSeptember 1, 2006 at 10:47 pm
Likewise, my reflexes retiurned after about 6 months of IVIG. I don’t have them now due to a lengthy relapse, but that is another story.
I can’t find anything in the clinical sdources that say what this doctor said to you. Perhaps it is some kind of mis-communication, as a diagnosis of CIDP would be based on other things rather than whether you are reflexive or areflexive.
Sometimes doctors say reckless things, and often later forget that they have said them at all.
AnonymousSeptember 2, 2006 at 1:08 am
Like Julia, my reflexes have come and gone, sometimes within a month, but when I am doing well, I have them. My neurologist has never once suggested that my CIDP went away or was misdiagnosed. Something about that word CHRONIC seems to escape people.
There are sets of diagnostic criteria for CIDP. Reflexes are only part of the clinical presentation. More important are distal and proximal muscle weakness and/or paresthesia and other sensory issues. Nerve conduction velocity is generally the key test, with elevated protein in CSF as a usual adjunct. Some sets of criteria require a sural nerve biopsy, others don’t. If you meet the criteria, you have CIDP (very likely, anyway). If you don’t, you don’t (likely don’t, anyway; nothing is exact in medicine).
Did the neurologist request lab work to test for a B12 deficiency? It is a reasonable to suspect it, as such deficiency has similar symptoms. It is possible you might have both, so if it has been a while, there is no harm. If he did not, in my opinion, he should not be second-guessing the CIDP diagnosis. Even if he did, he should wait for the test results.
Godspeed in dealing with this doctor.
AnonymousSeptember 2, 2006 at 11:49 pm
I had GBS almost two years ago and never got back my ankle reflexes. I also have constant tingling in my feet, have to take two hour naps. Do you know if reflexes dont come back with GBS?
Also my cousin had GBS 18 years ago and now has CIPD. He has had five treatments of IVIG and felt great after the first three but after these last two have had balance problems, pain in spine and legs, dizziness, and difficulty walking. Anyone have bad effects from IVIG treatments?
AnonymousSeptember 3, 2006 at 12:47 am
“Never” is a medical term I thought Dr’s didn’t use anymore.
CIDP usually sees loss of reflexes as a symptom, but not always. Therefore, as you experience recovery with IVIG, it would seem plausible that you might see some return of what you lost. In this case reflexes.
No problem with me. But I NEVER went to Medical School either……
Have a great Day !!
AnonymousSeptember 14, 2006 at 1:19 pm
Sometimes doctors say reckless things, and often later forget that they have said them at all.[/QUOTE]
[B][I]hi, sorry to butt in here. im new and trying to read and find my way around. i just can’t help but jump in here as i’ve found this to be so true, unfortunately, in my experience. not that all docs do it but it can and does happen and you bet it can cause problems. it’s just great to finally see someone else say it. sorry for jumping in. dj [/I][/B]
AnonymousSeptember 14, 2006 at 9:17 pm
I really hate to say this but from what I’ve heard from many other people in the military is that the dr’s aren’t that great. They seem out of touch with new research & developments. My friend even had a military dr tell her that she was a bad mom because her 2 year old will only eat turkey & watermelon. So I wouldn’t put much crediance into what that dr said to you.
My daughter got her reflexes back after 4 treatments of IVIG. She’s lost them twice now & gains them back again after getting her IVIG.
From my experience a CIDP’er loses their reflexes during a “flare up” or relapse. They may gain them back when “well” again. It’s called relapsing & remitting. Maybe you should send that dr a card with the definetion for relapsing & remitting on it. SHEESH!
I hope you get a better neuro soon. Any chance you could see a civilian neuro on a regular basis. I would think with a disease such as CIDP that it would be better to have that consistency.
AnonymousSeptember 15, 2006 at 5:37 am
I agree with all that has been said. Just for interest perhaps; the presence of a tendon reflex requires a fully intact circuit from the stretch receptors in say the thigh muscles for the knee jerk through the sensory nerve to the synapse in the spinal cord back out through the motor nerve to the electrochemical link to the thigh muscle making it contract. Any interruption to this circuit reduces or abolishes the reflex. DocDavid
AnonymousOctober 3, 2006 at 12:05 am
the question of reflexes has been driving me crazy. My husband has CIDP- diagnosed in part by a sural nerve biopsy which showed inflammatory and demyelinating nerves (!) But he has brisk +3 reflexes, and always has had. There is a lot of neuropathy in his family- and CIDP is supposed to not be hereditary (though a recent Neuropathy.org cited a study where they are delineating a gene for CIDP)
Our neurologist felt my husband has therefore 2 types of neuropathies- CIDP and hereditary sensory-motor neuropathy with spastic paraplegia.
Do you think lightening can strike twice in one very unlucky family? Can CIDP be hereditary? Can it have reflexes that persist? Anyone with any answers?Thanks, one frustrated lady, Sigrid
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