bleak

Tonight I am having a hard time being able to think clearly. I saw the MS doctor yesterday and I have to say I've never left an appointment feeling so bleak (and there have been some pretty bad appointments...)

No point in being all flowery. She is nearly certain this isn't MS. I suppose - most observers would say why aren't you celebrating? Well, its just not that simple.

Her reasoning is that there hasn't been a significant change in my MRI. She feels the spots they see on MRI are nonspecific and basically haven't changed. She did open up the MRI file and look at two series. She pointed some things out to me but really only spent maybe a minute total looking at the MRI. I handed the MRI CD to her, so it isn't as though she's studied it before today. For a large portion of the appt she flipped back and forth through my chart trying to find the other MRI reports.

My walk was off the last couple of days so I performed for her by walking up and down the hallway. Its so humiliating. Most of the time, when my walk is bad, I try my best to appear 'subtle' so I don't bring too much attention to myself. I can't hide it - but I just act like everything's normal. I act like people aren't watching me out of the corner of their eye. But when I have to perform, well, its humiliating. I hate it.

She eventually said: I will continue to monitor you for any changes but really I don't think this is MS. She is going to refer me for a second opinion to the movement disorder specialists, back to the same neurologist who sent me to her in the first place. She mentioned seeing another white matter disease specialist (ie. another MS doctor) just for a second opinion as well but I'm not sure if in the end that was her plan or not. She wouldn't commit but believes it is a movement disorder/ataxia.

I am more depressed about my situation today than I have been through the entire process.

I suppose I have a genetic/episodic ataxia; the classification of which I do not know and therefore have no way of predicting the course of the disease. Genetic/episodic ataxias don't have any treatment and most, after years with the disease remitting, eventually lead to progressive, permanent disability. This - of course - is information I've garnered from my own research. Dr. Z is not helpful on this matter b/c she is not an expert on it and who the hell knows if she'll refer me to an expert. She's not so good on the 'follow up' thing.

Faced with this prospect...I'm finding it very hard to see any silver lining.

I guess I had hoped it was MS because that was a solution. MS has 1. a name 2. support groups 3. research 4. treatment 5. legitimacy 6. hope

A genetic/episodic ataxia has none of these.

I wanted to ask her: what if it was you? What if your ability to function at a reasonable level was impaired for days at a time, with no warning and no prediction how long it could last? What if you had children and a life and a job but you were told to just merrily suck it up and carry on?

How do you deal with this uncertainty? How do I carry on with the next ten years? It is *s0* simple to say why worry - but it is not that simple to live it. I would have said it too. I would have said - live your life as you normally would have and enjoy every day. It isn't that simple.

What hurts me the most is that I don't wallow. I don't stay at home on sick days when my walk gets bad and I am more than capable of putting things in perspective. Most days are not as bad as the first days and I'm glad for it. I remember last year when it exhausted me to walk across the room because every step was a nightmare - but this latest episode doesn't exhaust me, its more of an inconvenience b/c it just takes me longer to get somewhere. I don't ask for the doctor's sympathies or claim that things are horrible. I've been dealing with this for a year and a half. I've been dealing with it alone and will continue to deal with it alone.

The problem I have now I guess is what to do if something changes. If it continues on like this - with days of ataxia interspersed with normal days, I guess I will just carry on. If it suddenly gets worse - or if something else happens, then what? Do I phone Dr. Z? And what of the repeat VEP testing she says she will order? (side note: she *said* she would order it back in the fall and never did, which I pointed out to her) What of the referral to the movement disorder neuro, Dr K?

I suppose I will see Dr. K again and see what he has to say about the idea of a genetic/episodic ataxia though I can probably predict that appt with amazing accuracy. I talked with K yesterday and I'm done with the testing. I've had so many tests and most of them have only made things more confusing. If they had been completely negative, I wouldn't still be being seen - but if they had been more clear, I'd have a diagnosis of some kind. So I will not start to repeat the tests just so they feel they can 'appease' me. Nothing made me angrier yesterday then when Dr. Z said - I'm not just going to keep repeating MRIs if there is no change. I was livid b/c I have never asked for another MRI. I am not a stupid woman - I know that my brain MRI doesn't look like a typical MS patient. I don't disagree even and the intonation that somehow I have been 'asking' for them made me see red. Anyway - I am going to refuse any more testing.

I made it out to the parking lot yesterday before the tears started. By the time I got to the car I was completely in tears. I sobbed in my seat with Kirk dabbing away tears and holding me for quite awhile afterwards. I can't even describe how I feel. I guess - I feel empty, I feel hopeless, I feel ridiculed, I feel foolish, I feel...bleak.