Atypical Multiple Sclerosis

In April 2006 I felt hopeless, the lowest point in my life. After spending a year trying to find a doctor that would help me, diagnose me, relieve some symptoms, SOMETHING, I was left adrift in a sea of incompetent, callous, unethical neurologists. My family and my primary care physician kept me floating. But when the third neurologist suggested I was psychologically impaired and that I needed a psychiatrist not a neurologist hopelessness settled in for a long winters nap.

Swearing off doctors, I called my pcp to let him know what happened.  He suggested another angle, an orthopedist. He figured we would get help by going through the back door. An orthopedist would surely suggest a neurologist after performing some type of testing, further strengthening my case. What was I a defendant in a court case? NO! I am done; no more doctors. Thanks, but no thanks.

I know what you’re thinking, “What about your hubby?” “What did he do, say?” He told me we were going to pursue some avenue, find help somewhere even if he had to physically carry me there. He was not going to give up. My sisters (both of whom were already diagnosed with MS-having MRIs and Lumbar Punctures consistent with MS), my mother, my friends, my brother (one of three that kept me going) would not let me give up.

So, my sister who lives about an hour away in a nearby state suggested I see her MS specialist, a well-known and respected neurologist. Hubby said make the appointment, I’ll get her there. Sis, called and said her neurologist (a then fellow overseen by this respected MS specialist) wanted to see me. He wanted to help, wanted to work with me. Assured Sis that if he couldn’t help because it wasn’t MS, he would find someone that would and could help me. Hubby kept telling me we were going to that appointment, end of story.

Seemed like a life saver was thrown to me, but at this point I was more than skeptical. My appointment was early June 2006 at 4pm. I don’t remember the day but I remember the time, because we left his office at 7pm. Yes, the doctors took three hours to review my ‘case’. WOW!

They(the fellow and ms specialist) left no stone unturned. I mean they listened to an entire year of my life-symptoms, tests, results. They asked pointed questions for clarification. Then they examined me. I followed their fingers in front of my face, they pulled at my legs, I performed finger coordination tests and finally I walked. But not very far. Immediately they saw problems. Actually they saw problems when I first walked into the exam room, but the second time confirmed what they saw and what their examinations found.

The result: some medication for my symptoms. Initially I was put on Baclofen for spasticity. Spasticity was causing the stiffness in my legs and the pain in my legs and the spasms in my legs. WOW! Medicine that was for a real symptom. Dare I have a little hope! I was cautious. I really held back my hope.

Holding back hope was very difficult because these two doctors cared about me. Really, the way the listened, asked follow-up questions, they way the spoke to me and hubby. When one person reaches out to another out of care, concern is truly a miracle. I had already experienced that with my family and friends. I knew what it looked like, sounded like, felt like. These docs were the true thing.

After their conference, they came back into the exam room and laid out an entire treatment plan. This included the aforementioned Baclofen. Also, they would redo MRIs, massive amount of bloodwork, and a lumbar punture: FOR STARTERS! Then they made two follow-up appointments. One six weeks later after the tests and one six weeks after that to monitor my progress. Then what?

Well their response was “we keep following you, until something definite shows. Meanwhile we keep treating the symptoms.” I was their patient, now. Sometimes, they said, it can take a year or more before a diagnosis can be made. Sometimes, because there is NO DEFINITIVE test for MS, a definite diagnosis cannot ever be made. But the good news was they could be sure this was neurological, upper motor neuron disease. They could tell that right then, upon examination. All else was up for grabs. It may be MS, it may not but they could and would treat my symptoms.

Hope springs eternal.