Newly Dianosed .. need clearer direction on next steps of the process.
This will be somewhat lengthy but I'll try to stay on point. Back in 1999 I had episode of vertigo coupled with double vision, that lasted for several weeks (it wasn't anything I couldn't work through) but I went in and was referred to a neurologist. She then did blood test, halter monitor, MRI and ultimately told me that "the tests came back normal and while they would love to put a big name to my symptoms they dont know the cause". I was told that if it continued for a lengthy time or got worse to go back in, but either I just acclimated to having the problems or they just gradually went away (not sure which one). lol Fast forward to 2014-15 - I had caught a pretty nasty flu bug in late December 2014, which lasted about two weeks before I went from that to vertigo and crossed-eyed sensation which has continued to last for 6 weeks now. I initially went to urgent care and was treated for vertigo (with Dramamine and Zantac). After a few days I felt worse and went to the emergency room where they ran tests for heart attack, stroke etcc. they did several blood tests and a CT Scan. Which the ER Doctor would tell me all came back normal with no problems on the CT scan and no sign of heart attacks. After a couple more days I went to a followup to my primary physician, and they basically termed it benign positional vertigo. And then did a procedure where they rotate the head to get the crystal back where they belong. Intially it provided some minor short-term relief but then the vertigo intensified. So then I was sent to a Neurologist who so far has done like 23 different tests for everything from lyme to ms etc... Unfortunately the MRI from 1999 was on film and cannot be located, and the "new" computer records have no text of the findings. So whatever info could have been gleaned from 1999 is lost to time. The new MRI does show approx 12 lesions (white spots) throughout the MRI, which he would classify as "recently fresh". They did the lumbar puncture and basically the only test he was concerned with was the CS Oligo Bands which came back positive and noted >=4 bands unique to CSF detected. But looking at the lab report I see the following also that are concerning to me - CSF Protein was 47mg/dL expected 15-45 The neurologist would basically say he could put me on Copaxone to treat the progression of relapses. But in order to do that he would have to diagnose me with MS to give me the medication, and he didn't know if I wanted to do that because the medication costs like 15k per year and I would have the MS diagnosis on my medical records. I then asked him if we could try treating the symptoms first and then go from there, so he put me on a script for weeks of Prednisone (1 pill every day for a week, then it descreases every week until all 6 dosages are consumed.). Then I have a followup in June 2015 with him to see where I am, he told us that this is bascially a "Clinicaly Isolated Syndrome (CIS)" and since it was only the first "documented flare up he was hesitant to slap the MS label on, unless i continue to have flare ups then he would. So what should I do get a 2nd opinion, just take the prednisone for the 6 weeks and see if it helps, let everything settle down stresswise and patiently wait for the 3month followup? I dont want to be chicken-little and go balls to the wall on this, but I don't want to be my normal "Macho" self and let them treat to the bare minimum either. Looking for advice etc... thanks in advance.
Getting a second opinion for something this serious is always a good idea. I suggest finding an MS specialist, even it involves a long drive, and get their input. A lot has changed in terms of MS diagnosis and recommended treatment course during the past decade, and not all general neurologists are totally up to date. When I saw a regular neurologist for my symptoms, I got a very similar recommendation as what you received: let's try Prednisone, and then see if there are more symptoms. He even gave me the same story about not wanting to "label" me with MS and thus have that on my medical record. So I did a bunch of research, and discovered that current opinion favored early treatment. I then found an MS specialty center (UCSF) and got a second opinion. The neurologist there felt strongly that I should start Copaxone, which I did.
The MS drugs are expensive, but the drug companies have payment plans that will often cover your copay or help significantly on the drug cost if you don't have insurance. That said, if you're currently employed with a group health insurance policy, you'll want to try hard to maintain that insurance.
I also think the hesitancy to "diagnose" MS is somewhat misplaced. I've been reading insurance policy requirements pretty closely since that first MS-related visit, and for things like long-term disability insurance, the insurers aren't going to be fooled by the lack of a formal diagnosis. They now ask about any medications, hospitalizations, etc., so sadly your medical record probably makes you difficult-to-insure already.
In a nutshell, my advice is to get a second opinion from an MS expert, and get on medication.