Thursday, January 31, 2008

clinic visit

January 27, 2008 was the fourth anniversary of my ALS diagnosis!!

The next day – January 28, I had my quarterly appointment at the Beth Israel ALS clinic. There were several things I wanted to discuss. The first thing was the recent promising study coming out of Italy. All the details are here . Anyway they are using lithium to stop or slow down ALS progression. Dr. Scelsa agreed it is very promising. Lithium is the drug that treats bi-polar disorder, but the dosage they used in the ALS study is much lower than that used to treat bi-polar disorder.

Dr. Scelsa can give me the drug, but it can be toxic. So my blood would have to be tested often—every week for the first four to six weeks, and every month thereafter. Possible side-effects are tremors, seizures, fainting, among others. It can also be hard on the liver and kidneys; that is the reason for the frequent blood testing. I welcome anybody’s feedback, especially if you want to read the info on the above link. I have not made a definite decision yet.

I will be seeing my primary-care physician on February 6, and I will also ask him what he thinks. My therapist, Dr. Livingston, who works with some patients on lithium, is very cautious, and wants to see the studies. The reason I am seeing my PCP next week is not too thrilling. You see, I have always had very low blood pressure. But in the last year or two, it has been creeping up. Now it is at a “dangerously high” count, according to Dr. Scelsa. So next Wednesday I go to Dr. Joseph and endure the three-hour wait to go see him, and get blood pressure medication. Feedback welcome here too. Anybody take blood-pressure meds? Which ones? What are the side effects? Getting old sucks, but consider the alternative.

I also have orders from Dr. Scelsa for a complete blood workup, which I have to take to my local lab. I went to get fitted for AFOs [ankle-foot orthotics] which I hope will stabilize my ankle so I can take a few steps, maybe even get into the bathroom?

I questioned the PT about the way I am sitting in the wheelchair. He agreed that I need serious adjustments. So I am hoping I can go to the wheelchair clinic at Mount Sinai Hospital when the Rehabco rep is there.

AND, I gained weight, which is another reason why I hope the AFOs will help me to take a few steps. I have cut out the nighttime snacking. I have been totally disgusted with myself for a while, so this was a real wake-up call!

So lots of phone calls and appointments. With my diminishing energy level, it hasn’t been easy.

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