Re: Reply to Maureen from Mike Gray

[Guest guest]

Hi Maureen!

Change " change from valium to looping " to " change from valium to klonopin "

and EGG to EMG and things will read better.

Thanks,

Mike

Reply to Maureen from Mike Gray

> 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

>

>