Autonomic tests and CIDP
AnonymousAugust 31, 2007 at 6:25 pm
My secretary called and said they found something with the autonomic test I had done 2 weeks ago. I know there was at least something with my feet not responding well. The nerve test they do to “make” a certain spot sweat is where the problem with my feet was. The tested 5 areas and the one on my feet didn’t really respond. Does anyone know anything about autonomic testing and what it could mean. I had posted my story under another thread…so far my test results have been negative, but my symptoms suggest CIDP. I am just looking for some more insight.
Another question while I am at it, I notice if I try to do too much, the next day or two I am more tired and my legs even hurt more. Plus, then I have more trouble walking and with pain. Just curious if others experience this.
AnonymousSeptember 1, 2007 at 8:21 am
Heather, for CIDP you need a neuropathy affecting more than one limb developing for a period of more than eight weeks. Deep tendon reflexes are absent or reduced and there should be specific signs in the electrical conduction studies. Diagnosis is supported by a raised protein level in the spinal fluid and a positive nerve biopsy.
The peripheral neuropathy is usually mixed motor and sensory, that is muscle weakness, numbness., pins and needles, neuropathic pain, loss of co-ordination, loss of position sense, loss of light touch sensation and loss of skin pain, loss of vibration sense and sometimes loss of skin sensation to heat.
The autonomic system is our automatic body controller and plays a part in BP, pulse rate, swallowing, breathing, bowel and bladder control and sweating.
The only two tests I know of are the sweat test and the intra-oesophageal ECG.
Good wishes, DocDavid
AnonymousSeptember 1, 2007 at 11:22 pm
Web up the ‘electronic textbook of dermatology’ from Stamford University. Pay attention to the ‘diabetic neuropathy’ aspects after reading the introductions. It really explains how your skin which is part of the ‘vascular system’ and is an autonomic system works. IF an area’s nerves are damaged, they simply cannot send the proper signals to sweat, or they can send the wrong signal to sweat when there is no need.
I learned this the hard way, as I did not, could not sweat at all for over a year after my onset. Once on IVIG I can sweat on occasions [usually rite after] and randomly.
IF you don’t sweat at all, just be sure to keep your feet moistened/lotioned! Dry feet can get ‘cracks’ called fissures that can lead to infections and other issues none of us here want to experience!
When you get CIDP…your body says REST! KEEP STILL! You try to work thru it all. You cannot pretend you don’t have IT! You will have to learn to ‘pace yourself’ to keep from getting overtired and having to pay the price. It comes with the territory. It does NOT mean, however it’s the end of the world, you just have to play with how you deal with the world. I hope this helps.
AnonymousSeptember 5, 2007 at 4:06 pm
5 years before my CIDP diagnosis, I was diagnosed with dysautonomia. This was determined by my abnormal autonomic testing, including missed sweat test responses and loosing conciousness on the tilt table (eep!).
Just because I have CIDP doesn’t mean I also don’t have autonomic dysfunction…though whether or not the dysautonomia is also caused by CIDP is another matter that I am completely in the dark in.
If you do have spots on your body where you’re not sweating, your body can over heat. Sweat is like natural (and sometimes smelly) air conditioning. When my body decides not to sweat, my face will flush – or sometimes I’ll turn bright red! In these cases, it’s important to stay hydrated and take it easy. And with dysautonmia, CIDP, and anything else, if your body say “rest” then rest! It’s something I still am working on learning, but the earlier you do, the better you will feel.
AnonymousSeptember 5, 2007 at 9:38 pm
Thanks so much for all the input. Monday I go see the muscle-neuro specialist.
My one doctor says I present like CIDP, but my tests don’t confirm it. I have only been dealing with my symptoms for about 3 months, so it is difficult to know if I am suffering form CIDP or not. Sometimes as I read through the site I think–Yes, but the fact I don’t seem to be progressing now, makes me question it. I seem to have “leveled” off, but I did have one round of IV steroids and I don’t know if that could have “stopped” things for the moment. What I notice is if I don’t get enough sleep or try to do too much–then the weakness in my legs is way worse and I get very fatigued. The weakness in my arms and hands bothers me more if I try to play piano or do a lot of writing.
I appreciate the insight from everyone and appreciate any more insight people have. I’ll report on what I learn–if anything on Monday in case it helps somebody else.
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