This Is MS Multiple Sclerosis Community: Knowledge & Support

I have had numbness in my right pinkie since July that has gotten more progressive. It comes and goes throughout the day with no known injury. I am now also starting to get pain in my forearm. I contacted my neuro (I have a movement disorder-cervical dystonia-that affects the muscles in the neck). Thinking the problem might be neck related, the neuro ordered a cervical MRI and an EMG. Neither showed anything significant. Betwen my primary Dr, the neuro, an Orthopedic Spine specialist, an occupational therapist, and a physical therapist, they can't agree on a cause-deciding it's everything from Cubital tunnel to Thoracic Outlet to complications from the dystonia. I also have intense pain in my neck and some degree of spasm. Pain and spasm are normal for dystonia, but Botox injections help control them. This amount of neck and shoulder pain is new and the primary Dr and physical therapist think possibly a pinched nerve in the neck. In the meantime, a friend at work has a wife with MS and I got reading about it. Her'es what I have going on that got me wondering: I have pain and spasm in my neck, numbness in my right pinkie and less so in the ring finger, occasional leg pain (1-2 x a month-the pain isn't severe); occasional eye pain (again very infrequent and not long lasting) and lastly, even though I take a dieuretic, within the past few months, I have found myself having to urinate anywhere from 1-2 times an hour somedays, yet other days I can go a couple of hours. I realize I don't have some of the more common signs of MS. Has anyone here had similar experiences, and form your experience in dealing with MS, does it sound like I should follow up with another neuro that specializes in MS or am I being paranoid??

hi my experience is not like yours, so i can't help you there - sorry.

it sounds to me like your doctors are going through the process of sifting through peripheral possibilities. but if you think seeing another neuro would help put your mind at rest, i think you should go for it! if you had another couple of mris besides cervical you could make sure there were no lesions anywhere else.

I sat up tall when you mentioned Thoracic Outlet Syndrome!

In 1991, I had tingling move up my left leg, then the feeling of a band constricting my upper left arm. My GP diagnosed me with Thoracic Outlet Syndrome, told me that most people got better with surgery to remove the first rib(!), and she even had the surgeon lined up!

I was scared and went to the Mayo Clinic for another opinion. I was so relieved when, at our first meeting, my doctor there said, "I don't know what it is, but I'm sure it's NOT Thoracic Outlet Syndrome."

Two weeks of testing (everything normal) and he still didn't know what it was. Then an MRI showed something in the cervical area that the neurologist thought was a herniated disc. The next Monday morning I had a cervical laminectomy to remove the disc, but it was so-o-o stuck with scar tissue that they couldn't remove it.

I am convinced that I had surgery unnecessarily; it was no picnic, but I have NO bad feeling toward Mayo's--they sincerely did their best and everyone was so kind and concerned with me. MS is very difficult to identify! I was diagnosed with MS in September 1992 by another neuro (whose nurse gave me the diagnosis over the phone !); needless to say, I don't go to him now.

Keep trying doctors until you find one you feel you can work with! Call and interview THEM! Write down all your symptoms and all your questions--may you find a doctor willing to listen. Best wishes for you in this journey.

thanks for the support