Re: symptons

[Guest guest]

Arlene, these are the kind of stories that help all the new comers. Keep in

your files and post again to the newbies that come abroad. Every

informative and makes us feel that " No " I'm not

weird!!!......................................Flora

[Guest guest]

Arlene,

WOW, what a good and informative description. I've been here for about 4 years

and I got a lot from your description. My symptoms were different but but very

similar. I just have a hard time putting stuff into words.

Thanks Much

M. PLS-FL

symptons

Morning Wayne,

You asked me when symptons began.

Early 2000 I was in the pasture and it started raining. I tried to run

but couldn't. Thought it was because I hadn't run in yrs. Even call some

friends and asked them if they had tried running lately.Was at an

auction shortly after and had to go outside to view some tables, it was

cold out and I had trouble moving about. Was at an estate sale shortly

after that and found I couldn't step down a step with arms loaded. Had

to call hubby to help me. (I had 3 antique places that kept me hopping).

Then May 2000 I turned in the kitchen to the left, the left didn't turn

with me and I stumbled across the room, hit the counter and broke arm

just below the shoulder.Things started progressing more rapidly after

that. Was walking like enstein at times, other times feet would

freeze and couldn't go. Balance was bad but I thought it was because arm

was in sling. Was checked in hosp for 3 days of tests Aug, 2000. Neuro

got out his textbook and told me I had Isolated Gait Ignition Failure.

knew that wasn't it because it stated " no loss of balance " . Nov 2000 saw

Dewey in Dallas who said Parkinson. Symptons were about the same, could

still walk in house and out holding to Gene's arm. Friends on phone said

my voice was slurred and what meds were I taking. Thought it was the

Mirapex. Also had hoarseness for a week or two but it went away. Aor

200l went to Jankovic in Houston. MRI's, EMGs, etc. All normal. Was on

apam, then Zanaflex, then Atavin, then added Baclofen to the Atavin,

Then added Carb/levo to the Baclofen and Atavin mix, Changed the Atavin

to apam and the Carb/Levo to Sinemet and left the Baclofen. Nothing

improved. Dec 2002 my speech started getting worse and I added a walker.

Jankovic said no meds had worked so that left IVIG, I said " no " because

my symptons were not severe like Stiffman Syndrome (another website I

was on for 2 yrs Thank God for the education we get from these sites).

At that he turned to another dr. in the rm and with back to me said

" MSA? " (multiple system atrophy(. The other dr. said he didn't know,

which also told me Jankovic wasn't sure what I had either. With that I

changed to neuro here in Longview *Houston is a 10 hr round trip and I

made 8 trips in 2 yrs. Neuro here put PLS on a piece of paper and said

when you come back in next month list the reasons you think you don't

have this. Pretty smart, huh? We determined PLS fit. Haven't had an EMG

since 2001 so am asking for one when I see her in 2 wks.

I know neuros have a very difficult time diagnosing these MND's. There

are so many of them and symptons can be so tricky. I know " startle " is

one thing that goes along with nearly all of them as well as others.

Gee, didn't mean to write a book but have to tell it in my own rambling

way!

Keep the faith,

Arlene

[Guest guest]

Thank you Arlene, I found your description very interesting and helpful.

Often times, I think that it is difficult to guage where we are on our

journey. You detailed scenario is most informative and certainly gives me,

and I am sure others, some milestones to compare to. I know that we all

progress at different rates, but we all go through the same stages.

Thanks,

Gene