Reply to Maureen from Mike Gray

[Guest guest]

Maureen,

My symptoms began in 1994, I think. I first began to notice them while taking

pictures at my sister's outdoor wedding. I like to take pictures from unusual

angles and kneeling or lying down are two great ways to get unusual and

frequently very good pictures. I noticed that I had difficulty getting up from

both positions and just put it off to being out of shape. I had stopped weight

lifting because of the time involved. I had also stopped jogging and had put on

about 20 pounds. So, I just figured that was the problem. Tried jogging again,

but couldn't really get moving. Got a " ski machine " to use indoors and could

only go about 2 minutes on it before my lungs and legs gave out. One day in Nov

94, I tried to run to help my staff on the Psychiatric Unit which I had become

director and my thigh muscles tightened and I almost fell. After that I began

noticing that my walking was also getting slower and I could no longer take two

steps at a time going up stairs. In Dec 94, I " froze up " when I turned around in

my secretary's office and fell against part of her desk. My muscles relaxed and

I was able to walk out of her office with very small steps. In Jan 95 I really

got stiff legs and developed a lot of trouble walking, but it was not daily,

just intermittent. The last week of Jan, I decided that I would see my Dr. on

Monday. He hospitalized me and I have been on baclofen ever since. I also began

on valium, but was taken off it by a psychiatrist I was " forced " to see by my

second neurologist. He changed it to Klonopin (clonazepam) and suggested that I

see another neurologist. He also put me on an antidepressant for about 3 months

so my insurance would pay for his visits. I got a professional discount and did

not have to pay the co-payments, which I thought was a great deal! I did see a

different neurologist after seeing my son's pulmonary doctor at Riley Children's

hospital in Indianapolis IN and telling her my story when she asked. She simply

stated that " you need a diagnosis and deserve one. " She referred me to Mayo or

Hoosier Neurology, where her husband worked. She stated that after telling me

that she thought they were the best in, then saying her husband worked there. I

immediately made an appointment to see him and got a diagnosis in two weeks,

mainly because he gave the only test I had not been given - an EGG. He did say

he was not definite about the diagnosis, but that he had researched my symptoms

and that was the only MND they matched. He definitely ruled out ALS. This was in

May 96. In Aug 96, after being cleared by him and my orthopedic surgeon, who had

replaced my left hip (another story), I returned to work as a therapist instead

of a Unit Director. I think the pressure of the Unit Director job under the

current Superintendent vastly contributed to my PLS coming out of hiding. It is

possibly related to the Viral Encephalitis I had in 1972. Think of West Nile

virus and you will get some idea of what I had. You can say I hit the lottery

twice. I was only one of two diagnosed cases of that disease in IN in 1972. It

was diagnosed by a spinal tap.

The baclofen was increased by my second neuro and he tried to wean me off the

valium, which caused me major problems and was the reason I was " forced " to see

a psychiatrist. My current neuro, Dr. Alonso at Hoosier Neurology,

located at Methodist Hospital in Indianapolis IN, agreed with the change from

valium to looping and, when Zanaflex became available in the US, put me on it,

too. I now take 80mgs of baclofen daily, 16mg of Zanaflex daily and 7mgs of

Klonopin daily. My startle reflex is basically gone. He has also told me in the

past year that I am doing better now than when I first saw him. He doesn't know

about the new problem with my voice, though. It is not severe, but I notice that

people just don't seem to hear me until I think I am yelling and I also believe

that they think I am mad. I still seem able to lead my groups and see the

individuals I have in Individual Therapy and they don't seem to notice any

difference in my voice. The difference may also be due to sinus drainage, which

I have annually during my allergy season. Baclofen was being used before this

problem and, thus, could not help it, nor has it influenced it as far as I can

tell.

That is my story and I am sure I have left some out and embellished part of it,

but I'm sticking by it.

Mike