do i need a second opinion?

[ysabel]

I know what the doc said is most likely right..
She watched me walk and did knee reflex.
My legs swung way out.
She had students following her so im not sure if she wanted to get a quick diagnosis to show off they do have big egos...
She didnt run mri or anything.

Since my diagnoses ive gotten worse.
It takes both hands to push the right break on my walker. I do not have nearly the strength i used to have. Ive always done physical work.

Lifting 50 plus pounds previously now struggle with holding my cell use hands free device
Not saying i have als but my muscles are definitely nothing of what they used to be.
Im more rigid in my legs and when walking they dont bend well at the knees. Locked up is the only way i can ezplain it.

I sleep 80 to 90 percent of my day away.

Small task exert me.



Primary doc did both knee and arm reflexes and
The knees at one time went far out and the other time went lightly out.
Arm reflexes i did not notice anything.

Im on low income health its a county program here..
Maybe it doesnt cover other test.

Im aplied for social security disability.

The diagnosis the neuro gave me was parkinsonism with dystonia.

Ive googled info but cant find anything about muscle strength or being exhausted all day long.

 

[vickim]

I looked up on Google parkinson's and weakness and I found a PDF www.bcm.edu/neurology/pdf/poster_pdcmdc_HPHA_MDS.pdf

While I did not understand all it said, it sound like you symptoms. It also mentions scoliosis.

Hope this helps hugs

 

[vickim]

Went to mod .... I will pm you

 

[Nikki J]

Hi if you were di ag nose d on exam alone then If I were you I would pursue this. Are you scheduled for follow up?
I seem to recall that there was a family his tory of some other neuro dis ease? If so do you know how this was ruled out?

I think you were put on new meds? Is fatigue a side effect?

Good luck!

 

[ysabel]

Thanks to u both.

Yes an aunt of mine had something called multiple system atrophy...
She passed away in 1978 from it...

I found out that multiple system atrophy is one of the things that can cause parkinsonism with dystonia.
There are three types.
Cerebreal (sp) which causes loss of balance, and thinking problems.. memory etc..
Parkinsonian type.
The parkinsons slow stiff walk.
And the combined type.
Which is combination of both.
People with msa speak with a croaky voice..
mine is croaky due to dystonia.

people with msa also have problems maintaining blood presure.... fainting spells....
Ive had them so bad i had to be rushed to er.... they found no aparent cause for my orthostatic hypotension...

Just put me on fludrocortisone...

I never thought anything of it till now.
But people that have msa have to be followed by neurology for a while with several test to confirm the diagnoses.

I know this isnt a board for my condition...
Im having a hard time registering due to some fluke they are trying to help me with...my ip somehow looked like a spammer..