Danny

[Guest guest]

I too took IV Solumedrol along with Imuran for seven years. Initially

(1990) I was hospitalized for five days and got a daily dose of steroids.

Then every three weeks I got 500mg of IV steroids every day for three days.

At that time I was living in DC and my neuro was head of the Neuro Dept at

town University Hospital - one of the best. Right? Read on. Two

years later I started getting 1000mg/day for three days every three weeks

along with daily doses of Imuran (an immunosuppressant). I was using a home

visiting nurse, so I decided to have a port implanted in my chest so I could

access it myself.

I wanted a second opinion; so in '92, I went to the Mayo Clinic in

sdale, AZ. There I had my fifth and sixth MRI which showed no sclera

on my brain or brainstem. Yet I came away with a confirmed dx of Chronic

Progressive MS.

In Dec. '93 I retired on disability and moved to Tucson, AZ. Cold weather

locks up my legs, so we moved to a warm climate. My neuro there was Head

Neuro at Arizona University Medical Hospital. He co-authored a text book on

dxing MS. One of the best. Right? Read on. After about a year, my neuro

asked me if anyone had told me that I was headed for multiple cataracts if I

continued taking 1000mg/day for three days every three weeks. When I told

him no, he showed no surprise. So we gradually started cutting down on the

dosage and extending the time between doses. I ended up with 500mg/day for

three days every 12 weeks. I could tell no difference. I would get a boost

of energy for about a week, then back to whatever normal was.

In Dec. '96 we moved back to Knoxville (don't ask). I went through four

neuro's within almost as many months. In August '97 I went to the MS Clinic

in Denver for a comprehensive three-day work-up. There I had my seventh and

eighth MRI's. Still no sclera. The two neuro's there told me I did not

have MS, I had PLS. They said that about 20% of the MS patients who go

through their work-up come away with a dx different from MS. We came back

home and started doing research on PLS. My neuro spent about 15 minutes

telling me over and over that I was going to die from pneumonia. I fired

him.

None of the normal medications for PLS seem to work for me, so I have been

on 5mg of Valium 3x/day for seven years now and can tell no difference in my

symptoms getting worse. My balance is shot, I have weak legs, foot drop,

emotional lability, speech impediment and can get choked on a drop of saliva

going down the wrong way. But my startle reflex has largely disappeared

such that I can fire a gun now without dropping it. At one time a car horn

blowing anywhere near me made me jump out of my skin.

Like Covington, your symptoms do not sound to me like PLS. I have a

grand-niece who has classic relapsing-remitting MS. The medication she is

now on (I forget what it is) seems to have it under control. She only

relapses every few months and the symptoms are very mild.

Good luck.

Vaughn

Where in W. TN?

_____

From: recyclerisbest

Sent: Saturday, March 12, 2005 1:23 AM

To: PLS-FRIENDS

Subject: Re: Vaughn

HI: Vaughn

I am from West Tenn.and I am only 45 years old and go to

vanderbilt clinic in Nashville to my nero and have been going to the

same one since about june 2003 and was dx with pls about aug. 2003.I

first started having my problems in feb. 2003 with left side pain and

my primary care doctor thought I had shingles but it never turned up

so he sent me to a nero close to home and after several mri's they

could not find anything so I thought it was my back and turned to a

chiropracter which took me for every office vist my insurance would

give him and it helped just long enough every day for me to get home

from his office before it went back to hurting and when he could not

get any more visits he said you have got a nero problem you need to

see some one else so here I go back to where I started at my primary

care doctor so he got me the june appt. at vanderbilt clinic which is

about 200 miles away,by that time I started losing the feeling in my

left leg and foot and by my sept. visit I had little feeling in my

left side , leg and foot but I guess I was lucky because I never

missed any work during all of this and in sept. took one week vaction

and took a five day round of steriods through an Iv at home with home

health nurses assitance and went back to work the next week and

managed to work for one more year until sept. 2004 when I lost

feeling in right leg and weakness got so bad I had to take medical

leave and had to use a cane to get around so I took more steriods but

they did not work this time so in dec. they gave me steriods again

and they did help enough for me to lay the cane down for now but I

still have weakness in legs and still have a bit of a balance problem

but have had water therapy and take a avonex shot weekly so sort of

ok for right now but not well enough to return to work. Thanks for

reading Danny