Re: Shands?

April 9, 2006

Hi Marsha, hope I got your name right..I've seen it several times but

had a senior moment trying to remember.

I went to Shands about 4 years ago. I had had every test you could

think of ( mris, emgs, many more I don't know the name of) and about a

gallon of blood for tests. I had a neuro which was so good and his

associate was a neuro surgeon. MS was ruled out after my 1st visit

because I was too old. (66 or67) . I did have one little spot show up

on mri that almost all older people have dr said. The neuro surgeon

gave a thorough exam and mentioned all kinds of diseases including mad

cow. I didn't like him so much but he referred Shands. said Mayo was

where he sent people he didn't like and Miami was the best neuro center

in Fl. That was out as my husband wouldn't drive there. So after a

hassle with my HMO I finally got to go to Shands Neurological center. I

was greeted by the head of neuro center Dr and he was with me all day

and other than having me walk (holding my hands) he gave me an EMG with

a class of his student looking on. He asked my permission to do that.

I'd had 2 before but this was different. when he hit a muscle that hurt

he explained what was going on to the class while holding the wire

there. He hit several spots that hurt and told me he would stop if I

said so. I wasn't going to be a chicken so stayed strong...ha ha

Other than going over all the records I brought along and him calling

Tampa dr several times he ordered 2 more tests to be done here and upon

results from them I have PLS. Of course they were neg. as all the

others except the EMG. I hadn't heard PLS before. The dr at Shands

name was Greer. Quite a ladies man I had been told even at an old age.

He is retired now. The report from Eva is different from mine. Another

PLSer goes to Shands on a regular basis. Haven't heard from her since

Dr Greer retired so don't know if there are changes. My appt was 10AM

and we left about 4PM.

I have no qualms about my treatment and have never heard any neg. words

all the years we've lived here about Shands.

When I got the results back from the 2 tests to be done here, my neuro

told me he was going out of Humana. I had no choice but to find

another. I am very satisfied with my new one even tho he didn't know

much about PLS. My records intrigued him and he has studied all he

could find on PLS. I guess it's been a few years and I see him every 6

months. Dr Winters saw me through all the testing and it wasn't a

struggle for me with him explaining as each test came back neg and why.

Each MRI was given with and without.... get done and stick a needle in

my arm and go back in the machine. Even my spinal tap had to be done

with a floriscope(sp) which the techs didn't like but for some reason it

was done. so many horror stories have been on here concerning spinals

and cannot believe why all aren't done like mine. I was put in a bed

after procedure and covered with warm blankets, same treatment as

post-op for about 6 hours. Then fed a meal and went home. no

problems!!!!

I have always had to have tests regardless what for in a hospital with a

dr on stand-by because I react to EVERYTHING. It is a farce having a

disease that I have to have meds for. My body does not want anything

but good foods in it.... I will not add to that as it would be another

chapter and I have babbled on enough. Hope you all don't get too tired

of my ramblings. Thank goodness I don't post often. Blessings,

Jeanette from Tampa

April 9, 2006

thanks jeanette. i discussed with my neuro about seeing the doc on St Pete

that a couple of others on the boards see for PLS. After considering my

options this weekend i am just not sure where to go, or even to go anywhere.

i have had the MRI twice over two years that show no MS or any other brain

disorder. My cervical MRI's show deg disease which is normal for age. My

spinal tap in 2004 was negative for anything. all the labs i had in 2004

and 05 never showd anything wrong. I was dx in 1991 with Lupus and treated

back then. all lupus test in 04/05 were negative. so i ws told the lupus dx

was wrong in 1991 and probably whatever it is now was then too. MS, Lupus,

Fibro, CFS, Lyme, Prion Disease, and many more have been ruled out since

2004. This is the first neuro mention HSP.

I don't know what to do or even whether to do anything at this point. i

think i mentioned this already, if i stay home all day sitting around not

doing much i am fine. if i go out like to work, or to grocery etc... then i

have problems walking and standing. lots of pain from standing and at times

walking. when i am tired i tend to be off balance, trip more, etc.... in

2004 had several sensory issues but don't seem to have those as much now or

some don't have at all. i continue to episodic twitching esp in legs,

burning/tingling below right knee, neck spasms/shoulder pain, stiffness

after sitting prolong time, stiffness after standing or walking a bit. and

etc...........................

my current neuro treats with baclofen, zanaflex and klonopin at night for

tremors. i can say at night im not having as many spasms, leg/feet jerking

since starting klonopin and zanaflex at bedtime.

i am considering Dr lin in St Pete too. I dont know what to do or

should i just keep taking the current meds and wait until something more is

visible. most seem invisible symptoms.