Ive been dealing with this for over 10 years

@garyedmonds4889

4 жыл бұрын

How did you deal with it And what did it affect if you don’t mind

I've got systemic sarcoidosis and it is terrible. I have almost every symptom of everything

Diagnosed at 27, haven't been able to drive a car since 26, years later, still no improvement

@CakeNCoke4ever

4 жыл бұрын

wow good luck, I am trying to get diagnosed and we think it is NS

I think I have neurosarc. I do have it in lungs, kidneys, esophagus, stomach, spleen, pancreas, skin... I have all of the symptoms of autonomous nervous system sarc. Also, perhaps PNS sarc because of the numbness in feet and hands. I lost my insurance, so can no longer afford to see doctors here in NV. Sad and in pain.

I have been dealing with it since 2011 its inside my spinal cord at c7 and c6

WHAT IF YOU HAVE A PACEMAKER DUE TO SARCOIDOSIS WHAT TESTS ARE THERE THEN

My mom has it and it was just correctly diagnosed by a lung biopsy. Please read some of the articles on booksc.org/s/neurosarcoids

Is the work toward recovery scaled against the original condition of the surrounding muscle?

Just diagnosed September 2019 my name is Gary and I want all the information I can get on this horrible disease I can walk on the walker but I can’t get up the stairs in my house just left UAB in Birmingham and I Will get more physical therapy and occupational therapy if I can thank you for your information

@stonethewiitch

4 жыл бұрын

My husband was diagnosed September of 2018. He does his treatments at UAB also. His is very severe. Completely wheelchair bound as of a few months ago and extreme memory loss, short term memory, and in constant pain. UAB has helped so much. His also is causing seizures. He had his first one this sunday and he no longer knows who I am or where he is throughout the day. We are still in the hospital waiting for some kind of help. Trying to research as much as possible.

@CakeNCoke4ever

4 жыл бұрын

hope you are ok, I am trying to get diagnosed for NS awaiting a biopsy

Have you all been ruled out for amyloid??

i have it an it sucks