Warning, this is extremely long. God bless those of you who are willing to read it. I am desperate for answers.

So my medical history reads like a laundry list of just about every symptom known to man. In 1995 I first went to my PCP with memory loss, extreme fatigue, and strange sensations all over my body. He diagnosed me with polymyalgia rheumatica. Then in 2000 I developed a severe pain on the right side of my face that landed me in the ER on IV Dilantin. After a CT scan to rule out a tumor and a visit to my dentist to rule out rule out a problem with my teeth, I was finally diagnosed with trigeminal neuralgia. I have had it ever since, but thankfully it is held at bay with Tegretol. I went back to my PCP in 2004 with even more symptoms including flareups of flu-like symptoms as well as the still present fatigue and memory loss, etc. He diagnosed me with Lyme disease and put me on two courses of doxycycline. I didn't improve, but instead of pressing my PCP for more tests, I gave up and just dealt with the flareups. Last January my health really started to go downhill. I chalked it up to the LD and just tried to muddle through. In April I was almost too ill to attend my own son's birthday party. That's when I decided to take matters into my own hands and seek further tests. I went to my PCP and INSISTED on being referred to a specialist. He sent me to a rheumatologist with the tentative diagnosis of lupus. The rheumatologist did a battery of tests and ruled out RA and lupus, and anything else rheumatological. She sent me for an MRI of the brain, and they found lesions on my brain. She immediately suspected MS and referred me to my current neurologist. I saw him in August. He said he was "80% sure it is MS" but he needed definative proof. Over the course of the next five months he did a lumbar puncture (inconclusive for MS, but ruled out LD), evoked potential test (normal), sleep deprivision test (normal), a spine MRI (normal), and a follow-up brain MRI (abnormal). He also sent me for a consulation to an MS specialist at the MS Center for Oregon at OHSU. She also suspected MS and would have put me on Copaxone then and there if I were her patient. For some reason my neuro was unhappy with her "hemming and hawing" because she could not be 100% sure. I spent $150 on a copay and a day's worth of traveling to Portland to see her, and now I feel that was a wasted trip.

So I saw him again two days ago, and he says he STILL cannot be 100% sure it is MS. He did say everything else possible had been ruled out...i.e. HIV, Syphillis, Hep C, etc. He says while my MRI does show many lesions, the worst of which is a half-dollar sized one at my brain stem, it doesn't prove MS.

Here are all of my symptoms that appear to point to MS:

Fatigue that is so horrible it makes me feel like I am covered in a lead blanket (I take Provigil for it)
Left afferent pupillary defect (I have had the vision in that eye dim and blur many times).
Monocular vertical double vision.
Intermittent numbness on the right side of my head, body, both hands, legs, etc.
Intermittent cognative difficulties, trouble focusing on a simple task, memory loss, etc.
Worsening TN attacks.
Severe intermittent vertigo.
Ringing in my ears.
And about a billion other things that are very random.

I have had to cut down on my work hours by giving up a day of my transcription to another fellow transcriptionist and occasionally having to call in to work and tell them that I couldn't come in because I was unable to do my transcription the day before and would have to do it the following day. I work in a medical administration office posting insurance payments on Monday and Wednesday and do medical transcription at home on Tuesdays, Thursdays, and Fridays. When I can't do my transcription on Tuesday, it means I have to do it on Wednesday and take off work from my office job. Fortunately my boss used to by my neuro's office manager, and she is extremely understanding and allows me to have the flexibility I need when these episodes happen. Even so, it is very hard to make that call.

Even though my neuro says he cannot be 100% certain that it is MS, he did finally agree to let me start Copaxone. He told me not to come back in 10 years pissed off at him because they discovered some new disease and I have it.

My question is, why is my neuro so reluctant to make a diagnosis? Do you think he simply doesn't think it is MS, or is he just being really, really careful? I'm so confused. I feel like I can't ask him any questions about my future prognosis. I almost got the impression that he didn't believe all of my symptoms were real. I have been keeping track of my symptoms for 12 years, and so my list is quite long. In the chart note I got after this most recent visit he says, "patient presents me with a litany of typed-out descriptions." What does that mean?? Litany usually referred to a repetitive rant! I am offended. Why the heck would I make up something like this when I get NOTHING out of it. He knows my goal is to keep working, not to go on disability anytime soon. I am a single mom with a 7-year-old son who is very busy, and I want to be strong and as healthy as possible for him. I have also not asked for pain medication or anything else. Instead, I will be starting a medication that I have to inject daily and might feel awful on. So why does he seem to reluctant to start treatment? The MS specialist told me that Copaxone will not harm me if it turns out I don't have MS, but it can certainly slow things down if I do. The only way my insurance would cover the Copaxone is with a diagnosis of MS. He finally caved and gave me one. Any thoughts?

Soooooo sorry this is so long, but I wanted everyone to have a relatively clear picture of what has been going on with me for the last 12 years up to the present time. Thank you soooo much in advance for any advice or support you can offer. This place has been a Godsend for me, and my son and I continue to keep you all in our prayers. ~Jlynn