new to this disease

[Guest guest]

>> I am new to this group...I have been unofficially diagnosed with > Neurosarcoidosis..@ least that is what my neurologist thinks..All I > know is that on Oct 6, 2008 my life changed..I woke up dizzy..off > balance..unable to focus..blurred vision.. & it got progressively > worst...I then noticed weakness in my right leg that then went to my > left..now I am unable to walk up stairs I now walk with a cane & I need > help getting out of bed...it's as if my muscles were shredded in a > blender and now I don't have any strength.. Can anyone let me know if > they experienced the same problems as me,, and will it get better? > Thanks for listening!>hi njones,

First of all sorry you have this dreaded disease but you are in the right spot for help and support. I was just diagnosed in august 08. I had several problems that led up to the final diagnoses. It started with eye inflammation, then joint pain , low grade fevers, and finally shortness of breath. After several mri's , cts, and spinal taps , and a lung biopsy it was found I have stage 1 sarcoidosis of the lungs! Also neurosarcoidosis .I have been on several different meds and not getting much relief. I too have a hard time walking, working, breathing. This disease truly sucks!! My muscles do the same thing. I was putting dishes in my dishwasher and bent over got stuck in that position like the tin man from the wizard of oz lol.

Did they run test on you? Spinal taps? Cat scans? Mri's? Are you on meds? If so which ones? As far as getting better it depends on your meds, how long it took to find the disease, what stage you are, and your positive attitude.

we are all sick in this support group and are all like family. Any questions you have usally get answered right away. If not please be patient someone will get back to you. Hope this has helped you. Our prayers are with you.

blessings for a pain free day ****Barb