my present

I received one of the most awesome Christmas presents today. I saw a doctor today (ENT, otolaryngologist whichever you prefer) who said that there is still a chance that we can make my "wobbles" more livable. He tested, he listened, he read my chart, he drew a diagram on a white board, and he said that we can try some things!

Well, I never thought that I would say this, but referring me to an ENT appears to be the best thing that the MS doctor has done for me! Yes, that's what I said.

He has recommended that I go "whole hog" on rehab for my "issues". Rehab will involve what the doctor described as "starting over: taking me back to my one year old self, and re-learning everything", with a vestibular physiotherapist. I will also be starting some sort of exercise, such as yoga, tai-chi, or if I feel so inclined, martial arts.

So I've been seeing the wrong doctor all this time. Ok, not really, but when compared to a neurologist, the ENT seems to know more about the effect of lesions in various areas of the brain, as well as what can be rehabilitated in the brain, and what can't.

My "wobbles" (he even knew that word!) are caused by demyelination in the PONS and brain stem. The PONS sends and receives signals from the ears, the eyes, as well as from the ankles through the spinal cord.

There is a catch though. I have to stop my lorazapam (ativan). He only prescribes suppressants for acute, short-term "dizzy" events. As I suspected, there is a possibility that my long term use of this drug has ruined or reduced the ability of my "brain to re-train". There certainly isn't anything that we can do about it now. I was doing what I could to make my life bearable, and the doctors that I consulted with said that the drug was fine.

So starting tomorrow, under doctors orders, I am cutting my daily dosage in half for one month. I am scared. The lorazapam works for me...it mostly controls the wobbles for me. But, if I want to think long-term, and returning to normal...I have to suffer now.

On January 7, I will have some tests (an ENG and a Posturography) to learn the extent of my difficulties. An ENG (electronystagmogram) tests the relationship between balance and eye movement.

It looks like things are going to get interesting!

Emily