PLS - Symptoms Improve?

[MichaelH]

I have been diagnosed as "possible" PLS by NIH. I have had every test imaginable.
My symptoms began in 2004 with the inability to wiggle my foot. It moved to drop-foot and then a noticeable limp.

I have been taking PT for over a year and walking and stretching almost every day. This past summer my gait improved and I was also able to jog ever so slowly (I was a runner for many years). My symptoms seem to be better than this time last year. It is a bit puzzling as I have been told and read that PLS symptoms always get worse.

Has anyone out there had their symptoms improve? I realize that they can level off, but mine seem to be a bit better.

 

[crystalkk]

Michael,

That's great have you been back to dr. What does he say?

Maybe you were mis-diagnosed.

Do you still have the footdrop?

 

[MichaelH]

Hi Crystal,

I was diagnosed with possible PLS by Dr. Mary Kay Floeter at NIH. She heads up the research unit for PLS at NIH. She was aware of my improvements; however, all other tests were negative. I still have foot-drop. When I stand for a period of time my leg gets very stiff. It is also stiff when I sit for a while and get up. I also still have a problem with balance.

I go back to Dr. Floeter next summer. That will mark 4 years since my first symptom.

I saw Dr. Paul Dash at Johns Hopkins before I went to NIH. He is the one who first mentioned PLS. He ordered the EMG, which showed that my nerves and muscles were perfect. He also ordered the lumbar puncture. Everything was good on it with the exception of the protien level which was slightly elevated. All other tests were conducted at NIH.

When I mentioned my improvement earlier this past summer to Dr. Dash he was perplexed. He said that PLS patients do not improve. They either level off or slowly get worse.

I was on Lipitor and Topamax since 2002. After a great deal of research by my wife, I switched to Zetia (a non-statin) and ceased taking Topamax. The Topamax was for migraines. My improvement started 90 days after going off of Lipitor. I went off of Topamax about 4 months later and, once again, seemed to improve. As you may or may not be aware, there is alot of controversy between a possible link between statins and ALS. I just wonder if Lipitor either caused my MND or just aggravated it. Neither Dr. Dash nor Dr. Floeter were impressed with a possible tie between these two drugs and my condition.

Anyway, I am anxious to here if anyone on the forum has had any improvement in their symptoms or heard of it happening.

Regards,
Mike