I have seen my PCP (who I happen to work for, and be good friends with), 2 physical med and rehab MDs, 2 neurologists, and physical therapist. No one can tell me anything. Only "lets give it some more time". My PCP is willing to do whatever tests we can find, and seems to feel like I do have MS. She isnt comfortable labeling me with MS though, as she is only GP, not specialist. Can anyone please give some insight? Here is my story:
About 6 years ago, I started having pain in my neck. Terrible pain, couldnt turn my head (I didnt drive for more than a month becasue I LITERALLY couldnt turn my head either way), I had sharp pains, more like electric shocks if I bent my head foreward/down. My right hand/arm was always numb. At the time, I worked for a pain Dr. He sent me for an MRI and it was discovered that I had a couple of bulging discs. He did a series of ESI's and most of my symptoms resolved.
Fast forward to 2 years ago. I started again with the numbness/tingling in my right arm. Became so bad that I lost all grip in my right hand. My 4th and 5 fingers were always numb, and my hand and forearm were always ice cold. I had another MRI to see if there was something else going on with my Cspine. MRI was normal. PCP thought maybe I had some tendonitis going on. Had me wear a brace on my forearm to relieve the tension in the musle. I wore the brace for about 2 months, only seemed to make the pain worse. Over the course of the last 2 years I have "bouts" of extreme pain/numbness/tingling/weakness in my right arm. From about mid-bicep all the way down to my fingers. Now, its starting to happen on the left side as well. In the last month, I have fallen twice, because I literally could not pick my foot up to walk. There is a whole list of random, insignifigant symptoms that seperately seem like not a big deal. But when I put them all together I dont like the picture I see. I have terrible headaches several times a week, frequent periods for "brain fog", memory issues, tactile defensiveness, blurry vision (much worse at night), eyes are always fatigued, sometimes twitchy, intolerance to heat (seems to make everything worse), terrible fatigue-no matter how many hours of sleep I get, I wake up exhausted, flucutate from diarrhea to constipation- have gone up to 2 weeks without an BM, periodically feel like my abdomen is being constricted- like im in a coat thats too tight and cant quite breathe or move right, absolutely no sexual drive or ability to *ahem* "finish", random bruises and peticii- without any injury, occasional tinnitis and feeling like I can feel my hearbeat in my ear, when I turn my head left to right-I can feel/hear grinding?... Like I said, weird and random. Some and/or all of them might not have anything to do with anything.
I had more testing done, than I care to pay for, including: muliple MRI's that have all been "normal", Vit D, B12, tsh, cbc, cmp, angiotenson enzyme normal, hiv normal, hep studies normal, lyme normal. I had an EMG-normal. Xray from shoulder down to fingertips normal. Everything is just "normal"
The only abnormal findings have been chloride and C02 were low, iron binding gap was a little high, esr was low. One neurologist told me that I have +Lehrmittes sign. (sounds like a definite MS symtpms from what Ive read)
Ive been taking Vit D50000u weekly, and cymbalta 90mg daily for nerve pain. They cymbalta helps some, but not enough that I can say I feel "better", and it seems to wear off fairly quickly. I have cut out almost all wheat/grain products, most sugar and most caffeine. Although, I have lost some weight from doing this, none of it changed any of my symptoms.
Im at a loss, and don't know what else I can do to get some answers. I have an appointment with my PCP again on monday. She has told me in passing, that she is at a loss as well, and isn't sure what to do next. Leaves me feeling quite frustrated. PCP mentioned fibromyalgia, but upon reading up on it, I dont think my symptoms fit.
Can someone just tell me, what in the world does it take to get a diagnosis. Any diagnosis?! Not that I want this diagnosis by any stretch, but how much more black and white can it be?!
