| | Sudden onset polyneuropathy, bizarre symptoms, no diagnosis - HELP!
Do you any of you know what can cause the sudden onset of polyneuropathy? It seems as if it may be some form of connective tissue disease (like lupus or scleroderma) but I have no diagnosis yet.
Also, have any of you had vascular imaging done in the areas affected by neuropathy? I'm being sent for some sort of vascular study tomorrow for my toes and another study in a couple week for my fingers. I'm not sure what type of test it is (ultrasound, x-ray with some type of contrast agent?) I believe the doctor ordered it wondering whether my neuropathy was being caused by vasculitis (inflammation of blood vessels that can cut off blood supply to nerves and damage or destroy them).
I was healthy until about a year ago when I started getting tingling in a patch on my back, then a strange migraine (aura only, no headache - it included tingling on one side of my face, arm, and both legs as well as cognitive problems like confusion) out of the blue, then bouts of vertigo and nausea occasionally. I had an MRI and ECG done to rule out a stroke/TIA, but it was normal. Then in November I had an acute episode of tingling (one arm, both legs, one side of face, tongue and lower lip) with a feeling of extreme cold, shakiness, weakness, and diarrhea. I thought it was a migraine without headache again, but it was pretty bad so I ended up going to the ER. I was told it was not a migraine, but they didn't know what it was so I got a referral to a neurologist. I recovered within about 4-5 hours, but the SAME thing happened again the next day.
Since then (nearly 4 months) I've had some symptoms every day. It's not usually that dramatic, but I do get intense tingling, numbness, burning, itching and other weird sensations in my feet and lower legs (left worse than right) on and off all day. At night it's more often a burning sensation. My feet change colour - usually a grey/blue colour - and get ice cold sometimes. I also get tingling along my left cheekbone with pain behind that eye and along the jaw and teeth, and blurriness in my left eye. I get sinus pressure and pain, heartburn, mild swelling in my hands and feet, burning in my chest and back, pain and cracking sensations in my neck, headaches, occasional cognitive issues (unable to think clearly and retrieve familiar words) that last a few minutes at a time then resolve completely.
The neurologist said I have polyneuropathy in my feet because I could not sense vibration or temperature changes. He also felt how ice cold my feet were and saw them turn purple. The rest of the neuro exam was normal. My brain and spine MRI were normal, but he is ordering one of the lumbar spine now to see if I could have a compressed nerve.
My blood work showed a positive ANA screen (fairly high) which usually indicates an autoimmune disease. I saw a rheumatologist who said that I probably did have a connective tissue disease (like lupus or scleroderma) but my blood tests for specific antibodies were all negative so we have to wait and see how it develops. They are sending me for the vascular studies to see if the polyneuropathy is related to blood flow problems.
If any of this sounds familiar to you, I'd love to hear your story!