autonomic involvement

March 26, 2009 at 1:09 pm

Hi Julie,
As you have seen in some of my posts, I have full autonomic involvement from my CIDP.
You ask if there are certain tests…
Going back, I remember the one main test I had done a few years ago to show autonomic involvement, was to have a skin biopsy done. And if the result shows “small fiber atrophy”, then most likely you will have autonomic involvement.
I had had a nerve biopsy done way back in the beginning, that helped them to get to the Dx of CIDP.
But the skin biopsy was to see to what extent the CIDP was doing, since it was progressing.
If you “google” small fiber neuropathy, you will see some of your answers, and if you actually go to the CIDP Foundation site, here is a quote right from there:
“Autonomic neuropathy is a type of peripheral neuropathy in which the very small nerves are damaged.”
As my CIDP progresses, it has caused:
Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility, tachycardia, syncope, neurogenic bladder, and phrenic nerve dysfunction with hypoxemia; and with Horner’s Syndrome; Benign autoimmune thyroid disease; Anemia; Hypothyroidism.
I have a urinary catheter now, and am on a TON of pills now…as it hits another organ it usually means more pills to take. And I am on monthly chemo now to slow the progression.
Some other tests different doctors did to show certain areas of the autonomic system were being affected:
-Monthly blood tests.
-With the dysphagia/gastroparesis/esophageal dysmotility: They did a “Swallow Test”, in which you are given different things to eat and drink, and they record it on x-ray. It is recorded, and it was shown back to me the problems.
-With tachycardia and syncope, that was just they simply monitored my pulse, (which was around 120-130 before I got put on a pill to control it), and monitoring the blood pressure when sitting then standing quickly, (usually a drop in blood pressure). Also, I was told this by my primary care doctor when he observed this, that my feet were red and swollen. He said it was definitely not a back up of fluids, (i.e. using Lasix). But that the peripheral nerves also assists in blood circulation. Due to the CIDP, and the loss of the peripheral nerves to assist the circulation, he said the blood tends to “settle” in the feet. Back when it first showed up, they did various cardiac tests to rule out cardiac disease or problems, and could only be explained by the CIDP.
-Phrenic nerve involvement with hypoxemia: the pulmonologist did various tests, of which I cannot remember the names of the tests–I just remember breathing into various tubes and gadgets, with x-rays as well. They also did Oximetry on me, which is that little clip they put on your finger to show them what your O2 saturation is. End result at the moment- my lung capacity is at 43% and my O2 saturation is down to 80.
-Neurogenice Bladder: the urologist did these very strange tests on me, which I can’t remember the names of them, but one was he put fluid in and recorded if I could keep it in or if it just came right back out, (mine came right back out, which shows the sphincter not to be working and more, and can show incontinence). There was also another test he did on me, but I can’t remember how it was done, but the end result was a neurogenic bladder, which can lead to incontinance, and UTI’s.
-With the thyroid problems: they monitor by three different blood tests. I remember the endocrinologist also had an ultrasound done of my thyroid. I am on thyrod pills for it.
Julie, I hope this helps with what kind of tests there are.
Luckily, I have some very good doctors. My primary care doctor very good, and if I have the slightest problem he either takes care of it himself, or sends me to a good specialist.
I went through three neuros. before I got the one I have now which I like alot. We can have discussions on anything I question. He is a specialist in neuromuscular diseases, and is head of Neurology at the local hospital.
With my rheumatologist, he is great, (he is in control of my chemo.), and we have had talks about the progression of the CIDP.
With the endocrinologist I used–I cannot say I liked or disliked him. He was there to mainly conduct all the tests involved, then the results and suggestions were sent to my primary care doctor to do treatment.
So, I think you need to keep looking for a good primary care doctor–get suggestions from friends and family. And with a good neuro.–get suggestions from people here in your area, or the foundation might be able to suggest one.
Hope this helped. And I do highly suggest to keep trying different doctors until you find one that treats you as a human and not a file number.