big day coming up

This coming Monday, October 22, is my six month (but really 8 months) follow up with my MS doctor. I'm nervous.

I'm sure that sounds strange to you. I fully expect to pass all of the neurological tests that involve my reflexes and motor skills, and mostly pass the tests involving balance. I think that the original purpose of the appointment was to check in on how the medication was working.

What is making me nervous is my ability to convey my "hidden" problems to the doctor. Well, it may not be so much my ability to convey, but more so the doctors' ability to understand me in my descriptions, and believe what I am saying...and assist me in dealing with these problems.

I first met this doctor in January. I was referred to him by another neurologist...the referral was somewhat of a, "we're giving you the final say on this one", with a touch of, "we have no clue what to do with these test results". It was this doctor's job to decide if I have MS, and to tell me so.

I remember him asking me if I have had any new symptoms that lasted more than 24 hours, and I know that I started to answer him, and he lost his patience with me saying that I was confusing, and everyone was confused and that was why he was seeing me. He then said that the things the other neurologists had said weren't important, were important, and therefore, I do have MS. He then passed me a sheet of paper, told me to pick a drug, and come back when I had done so.

Let's leave out the next bit, and move on to our second encounter.

I then saw him again this past March. I had been in contact with the MS clinic because I had this ferocious bobble-head going on....for sometime. My head felt as if it was constantly moving. So an appointment was made for me to see the MS Pharmacist, who after spouting that it is his job to be ethical and helpful, walked out of the room on me, muttering that I wasn't describing vertigo. About five minutes later, he returned to the room with the doctor. After some tests and questions, he said that he could think of no lesions that would be causing my symptoms, and maybe they had missed something on previous MRIs. In the meantime, the pharmacist was asking my husband if my head ever shakes like someone with Parkinson's Disease.

An MRI was performed, and I never heard anything more from the doctor. But what else happened in the days immediately following this second visit is the grand finale. I was desperate for some relief. I think back now, and I don't know how I got through that period. I remember getting up in the middle of the night to feed Nike, sitting on a lawn chair in the basement while she ate, and my head felt as it was moving down, left, down, up, right, in, right, down, up...

I made phone calls to the MS Nurses, and left messages. I was told that if my issues were so troubling, that I should visit the emergency room, and wait and see a neurologist. Or maybe I should see a psychiatrist, because this could be all in my head. Well, I was so upset after that phone call, that I took .5 mg of Ativan to calm me down. Well, I don't know if it calmed me down, but it took away my bobble-head! And it did the next day too!

So I decided to make some adjustments to the nurses advice, and I phoned a neurologist instead. I explained both the situation and my remedy, and was met with, "Well of course Ativan works for you. It is a well documented vestibular suppressant. Anyone who is familiar with your file, would know that we are surprised that you don't have more problems like this". This is MY MS. The neurologist who only treats patients with MS, could not see my situation as something he had seen before, therefore, it could not be MS related.

How do I get the MS doctor to see that even though the pages appear to be upside down, it's still the same book that he reads everyday?

How do I get quality care?

How do I keep myself from saying that the level of care I have received in this MS Clinic is callous?

I just want my symptoms somewhat controlled, and a drug to slow the disease down that doesn't make me cry for seven months. Then I can get on with things.

Emily