Hello, I have posted here before and I suspect will be a regular poster in the next few months. I will try to break my questions up. I really could use some advice (and a big hug, but I will let my family take care of that!) although right now no one knows what to do with me.....
I am a 46 yr old female. 16 yrs ago I had a bout of tingling sensations. Neuro chalked up to prewedding jitters - EMG done, MRI only a t2 spot. Then 15 yrs ago after birth of my daughter, life exploded. Immediate onset of anxiety feeling and burning sensations in muscles and tingling everywhere. It was horrible. So much testing done including bone marrow biopsy. Only thing found was a polyclonal IGm indicating infection/inflammation but they said you had a virus, move along with your life. And so I did.
Throughout the years, more weird neuro tingles and vibrations, but nothing bad until 2 years ago. Then the world exploded again, but MUCH worse. Cranial nerve and autonomic attacks - almost like migraines, spasms with heart rate elevations, head pressures, "teething" feeling, feel like gums swollen, like someone pulling tongue down throat, dizziness, nausea, and the tingling and muscle aches back again. Ive had trigeminal, glossopharangeal and occipital. And the twitching and random muscle burns and tingles and vibrations everywhere. This has gone on for TWO YEARS. TWO YEARS of a million doctors and tests. How can this be? Still have that polyclonal IgM and now an antinuclear antibody but not postiive on any autoimmune test except anticardiolipin antibodies. A well known lyme doctor says I have lyme and definitely reactivated epstein barr virus. EMG last year says no damage, but no biopsy taken. Have been taking lyme meds but feel like thats inaccurate and Im not getting any better.
So here are my questions
-Anyone with an infectious cause to their neuropathy? I understand I can't cure EBV so does that mean this will just get worse and worse
-I am going to get the EMG repeated. I believe I have some muscle atrophy in calf as well. I guess my question is this - I definitely have neuropathic pain, but not sure about neuropathy b/c I have no real deficits - meaning, my feet are not numb, I have heat/cold sensation, etc. What does that say? Or is the level of damage/no damage not important. I can still run, workout, wear heels, etc.
-As the fun continues, I have begun to get repetitive sleep onset breathing issues. Like I just stop breathing or breathe too shallow and wake with chest pain and a dying feeling. That has me scared that something degenerative is going on with my brain! Or can neuropathy impact your brain and central nervous system as well. This was all preceeded by months of weird palpitations like my heart was short circuiting. So there is definitely an autonomic component as well.
-Having compression nerve sites as well. LIke when I rest my elbow on table.
-Finally, can PN present with crazy amounts of anxiety? Thats how this all started. Like someone flipped a switch. And no psyc drugs did anything for it. Only made it worse. I know it sounds either autoimmune or infectious, right. Could it have been dormant for 15 years?
-Is it possible to have cranial, automatic and pn at same time?
Sorry, Im just so scared. I need this to end. The nightmare the symptoms produced in 1999 scared the buckets out of me and when they returned in 2013 and haven't gone away ......
Sorry its so long. Im rambling now. Any advice!?
