New Neuro ? May not Be PLS

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Geo

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Well i had a great expierience today ,went to see a new Neuro ,Super Friendly Guy (About Time ) says he dosent think its PLS going to look at my records i took ,looked at my MRIs of the Brain says Cant see anything wrong with the Brain but only real evidence is through an Autopsy .I laughed and Said You'll have to Wait on that .He laughed . But over all good expierience . Glad i went .I asked about taking Prednisone
he said all kinds of reasons to not . Negatives outweigh the Positives . Geo
 

puzzled36

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Geo, did he have any idea what you could have? Glad you had a positive appointment.

Gina
 

Geo

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DX UMND/PLS
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12/2001
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Ruskin
He Mentioned Stiffman but i said ide be dead by now and he acknowledged that . So nothing yet i go back in 2 weeks hes going to look at all my records as i kept all my records and keep them in a manila envelope seperated with names . Now if someone wants info they dont have to wait .You have a right to copies of all your records ,i even have my MRIs Exrays etc . Geo
 

crystalkk

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Geo,

Just curious did you ever go back to nuero?
What did he say?
 

CindyM

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This is the second member from Florida who has a Doc suspecting Stiffman's. Seems like an awfully rare disease, even amoung the rare disease crowd. So we have 2 different docs, one on each coast, thinking they have patients with this? Maybe your doctors are spending too much time in the sun. LOL.:-D
 

Geo

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Messages
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DX UMND/PLS
Diagnosis
12/2001
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Well Crystal he now confirms PLS . This disease is so rare many Docs. have not encountered these symptoms before , he even said your my first PLS patient and thanked me for Bringing my records with . He said come back in 4 months but considered all suggestions i had and explained why i do not want to go on Prednisone or the others as they have very serious side effects which never go away . Theres no answer for us and wont be in the near future . Priorities go to the most needy and we dont fit there . My suggestions are take charge and do what you think is neccesary to help yourself . I have the feeling of being in the twilight zone . One of us will come up with something ,maybe even become famous on the way ? . This is what makes America so great we can . Some of us have Drive and Some just always follow . So be Open minded but also be causcious . Geo
 
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