Re: joan from jessica

[Guest guest]

thanks for the response joan,

Yes the dr has me on the duragestic patch, demoral & vocodein ES for break through pain.

And in reality i know this must all go with the disease,, but sometimes i wonder how much more can i indore. i have PT schduled for sometime this month to start,, but i am not looking forward to it.. i have another MRI on the 13.th the one lessions on the left rear lobe is not went away with treatment yet.

And when i was DX i was told i have CNSV secondary to the NS

so i belong to both support groups, and the funny thing is.. all the symptons are the same.so by now i don't whats normal for either or what DX is causing me the problem at the time.

But thank you again and i am thankful for you all being in my life and helping and i hope i can do the same for you...

Many Hugs and Blessings & a Pain free day

IN pa

Hi ,

Hmmmmm ... I was actually dx'ed with vasculitis long before I was dx'ed with any type of sarcoid. I've had skin lesions since 1989 ... they were biopsied, and turned out to be vasculitis ... at least the particular type that were biopsied ... I have several types of lesions, and only one type have been biopsied. I do remember researching vasculitis way back then; and then re-researched it along with sarcoid when I was dx'ed with pulm. sarc in 2000, and yes, I remember thinking that the symptoms were much the same, but also remember reading that the vasculitis was much more serious than the pulmonary sarcoid. I find it really scary that no dr. put two and two together ... vasculitis and sarcoid ... and were more concerned at that time and it took developing severe neurological problems for a NS dx to be made ... hence, treatment too late.

Anyway, , I see you are from PA ... are you near the Phila. area, and if so, which hospital do you go to? I have 2 doctors at Jeff ... one in the immunological and infectious disease group, and one in the neuroscience/stroke center ... both are great doctors.

Hugs and prayers,

Joan