For those with mainly motor issues…
AnonymousFebruary 11, 2010 at 9:30 am
First thanks for all who post on this forum. I have some undx’ed symptoms, and have had them for quite some time, though slowly progressing, actually over many months to years. The range of experiences with CIDP amazes me. And I keep up with everyone’s trials, tribulations, and victories.
I have posted before but it has been several months. To the point, I have slowly progressing weakness in all limbs, nothing debilitating yet but I can certainly feel it. I also have loss of muscle mass – don’t know if I could call it atrophy because it appears to be symmetric.
A few more facts: perfectly clean EMG 1 yr ago at a nm specialist, clean neuro exam as of September ’09, and only very minor sensory symptoms the last few months.
My question is, did anyone experience something similar either prior to or during the dx process? I know some of the loss in CIDP can be from true clinical weakness and muscle disuse, but that is not the case with me. Did anyone experience muscle mass loss while still being very functional?
Thanks for your time.
February 11, 2010 at 11:47 am
In looking back, prior to dx, my son would always comment on his biceps, it was as if he was trying to convince both of us that they were there. He was conscious of it and there was no obvious bump if you will. As well, his calves were always thin. I will say that once we improved with the treatment plan that “we chose” to present, there is tone and definition. I noticed a change in endurance and stregnth after a tonsillectomy there were 2 years between that surgery and our dx. A catalyst for me was the summer following the surgery (had tonsills out in spring) we got a pass to great america and it required alot of walking. we would go weekly and frequently brought his best friend. My son would tire and I eventually started bringing the wagon. I mentioned this to the neuro because I thought there was a connection eventhough it was 2 years prior, he did not think the two were related. I don’t know either. I have always felt that our trigger was either the surgery or being stung by three bees at once in South Dakota. Because shortly after those bee stings was the peak of symptoms ( 2 year point) Now I have gone a step further and started looking at the possibility that leaky gut is the cause because of the constant release of toxins released in the body, causing the constant immune reaction. Prior to the tonsilectomy, we were on several rounds of antibiotics because of recurrent strep infections. Antibiotics could be the cause of the leaky gut as they cause candida. These are ALL just my theories, take them with a grain of salt!
But yes, we did have muscle loss prior to dx and were pretty functioning before our crisi or flare what ever you wnat to call it that brought us to the state of paralysis.
Kevin did have conduction blocks in his ncv/emg and our neuro exam showed no reflexes anywhere.
AnonymousFebruary 11, 2010 at 3:17 pm
I really have had no tests beyond the standard bloodwork, including Lyme, MRI’s, clinical exams, and EMG/NCV’s. At my last exam in September ’09 there was nothing abnormal. They have had a somewhat difficult time getting a reflex in my left arm in the past (they made me grasp their hand with my right hand to “distract” me and got a reflex) but other than that they don’t see another need for testing. Mainly because my clinicals have been fine (no clinical weakness).
I do have a follow-up in March with the nm specialist.
AnonymousFebruary 11, 2010 at 7:31 pm
these diseases dont have rules, it is us that draws the line of definition not mother nature. IF you have gbs twice you might fall into cidp therefor making the chances of a second occurance unheard of. you could have progressive cidp, acute intermittent cidp etc. if you have gbs when you already have lupus its called “guillan barre like polineuruitis in lupus” or “sjogrens”. if you have oregen, endocrine, skin yada yada we change the definition to POEMS. I have MOTOR intvolvment and I think it is both central and peripheral do I have ALS, no because what I have relapes and remits thank god. I dont know, could be the neuromuscular junction. ITs all a big spectrum picture a cleaver that chops it into boundries and sometimes these boundries overlap and mix and these are rare but it happens. these over lappers are you and me who have had demylination and perhaps axonal another time, maybe the MG a different. who know the next now we are divided illness by causes eosinophila myalgia is a motor neuropathy caused mt l triptophan while chines parylitic syndrom is a motor involvment caused by c jejuni which is actually smart because at least they identify the catylist but its all just AMAN. mixtures like us are rosetta stones saying that its all the same just a different language.
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