MS or Fibromyalgia?

  Hi everyone, I need some help here. I dont no where to turn. A year ago, is when it all started. Out of the blue I fainted, I was taken to ER and everything seemed to be normal. Three days later, is when my pain started. NERVE PAIN, is my main complaint. I had pins and needles feeling in my face sooo bad, it was like I felt every nerve. Then I started having this horrible stabbing, numbing sensation on my face, right side, lower cheek, pain so bad it stops you in your tracks. Soon after that I suddenly started seeing spots in my right eye, sometimes if I look to the left, its blurred. Then, my back started hurting, somtimes my upper back, which made my shoulders and neck ache. Sometimes its my lower back, which will affect my hips and legs. Then nerve pain started all over my body, pins and needles, burning, stabing. I have extreme fatige, bad joint pain in my knees, hips, right elbow. I have bad stiffness, when I wake up, or if I sit too long. I also leak urine (embarrasing)

 My doctor thought for sure I had MS as soon as I said I get stabbing pain in my face. I went in for a brain MRI, which turned out to be normal. She referred me to a Neoro. The Neoro said I had Fibromyalgia. I dont have insurance so they dont want to run too many tests, and doc visits they seem to always be in a hurry. Im on 3000 mg of Gabapentin a day, 25 mg Amitriptline, and Melaxicam for joint pain. I was told 3000 mg. a day of Gabapentin was a high dose, somtimes I feel I need it increased more.

 Im going to see a Reumy doc on Jan.31, my regular doc wants me to go on Lyrica and I dont have a good feeling about it. Dont mean to keep going on and on. My question is... I feel like Im going through something other than Fibromyalgia......have any of you had these symptoms? I go on Fibro board and it seems like I have more nerve pain than others.

                                                            Thanx, Tara (38 yrs old)

 

 

Hi Tara,

Welcome to the board.  I am sorry you are having such a rough time.  I do have nerve pain everyday but I am certain it's not to the extent you are. 

Every evening around 4 pm it starts.  Sometimes it just icy-hot weird sensation sort of stuff.  Other times, it's burning pain.  It can get pretty uncomfortable. 

You may want to request that MS is kept off your medical files until you know for sure.  Even a mention of suspected MS or ruling out MS can make it very difficult to get insurance (life, health, disability).  MS is an extremely expensive disease to treat.  The meds that attempt to slow down the disease progression can run $3,000 - $10,000 a month. 

You are correct, no one can diagnose you.  It can take years to get an MS diagnosis.  It is good news that your MRI came back normal.  However, I have heard of some that had symptoms for years and normal MRIs only to have it eventually show up on an MRI.  Most doctors won't diagnose MS until you have lesions on an MRI.......plus some other positive tests, all other possible disorder/diseases ruled out. 

Dianne,

I just googled syrinx.......you referred to it on another thread.  Yikes!!  I am sorry!  That sounds awful and the pain is well known and difficult to treat.  Please hang in there.