One DEFINITE test to show if autonomic involvement is happening.
I forgot to mention this to you. There is one DEFINITE test to show dysautonomia, (to show that the CIDP is hitting the autonomic system).
It is a Skin Biopsy. A very simple test done in the doctor’s office.
If I remember right, they numbed the area on my thigh, then just stuck in and out, what looked like a thick needle in one area. Simple. It just left a little hole, that was covered with a bandaid.
If the result shows: “small fiber atrophy”, then you know your CIDP is hitting your autonomic system. Google “autonomic system”, and you will see what areas of the body can become affected.
As my CIDP progresses, of which treatments have been unable to stop the progression of it–just slow it down some, my diagnoseses keep getting longer as it hits the different areas of the autonomic system. Mind you, I was healthy as can be prior to all of this junk! I always ate healthy, when flu came around, it always seemed to skip me, and never saw a doctor for years.
Now, because I have a team of 7 doctors, I seem to have a doctor’s appointment or treatment, (chemo at the hospital), every couple of weeks or so. My current diagnosises are: C.I.D.P., (Chronic Inflammatory Demylenating Polyneuropathy), with Lewis-Sumner variant; with small fiber atrophy, (autonomic neuropathy); Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility, tachycardia, syncope, neurogenic bladder, and phrenic nerve dysfunction with hypoxemia; and with Horner’s Syndrome with photophobia; Benign autoimmune thyroid disease; Anemia; Hypothyroidism; Left subclavian vein Mediport, (single lumen); Shingles reported 10JUL08.
(I have to keep a current sheet with current diagnosises and current meds handy, for when an ambulance is called, every now and then).
It all started with eye involvement, with my Primary Care Doctor thinking I had “Horner’s Syndrome”, (which you can google), of which I went to him complaining of light hurting my eyes, and causing me bad headaches/migraines, (photophobia). He then sent me to a neuro, to get to the root of what was causing it, and after two years of further symptoms happening, it was explained as CIDP.
By the way, my Neuro-Ophthalmologist put these new plugs into my eye ducts. He said he saw my eyes were dry, and that the plugs were to help stop dry eyes which lead to migraines. Between that, and a pill called “Indocin” that I take 2 times daily, I have not had a migraine for years now.
So, I hope this helps– a good suggestion to ask for that test to see if the CIDP has hit your daughter’s autonomic system for sure.