Sarco What?

BeachBumJan
0 Recommendations

I know how you feel. I look fine but I don't feel fine. I feel like people at work think I'm just making things up so I can have an excuse to leave work.

I tore my rotator cuff last year lugging my oxygen tank around! Go figure!!

I hope you don't mind me asking, but how does Nero - sarcoidosis act. What are the symptoms.

I feel like my nerves are going to jump out of my skin on my right side. When I have an attack you can actually see and feel my nerves jumping. My doctors say it's panic attacks - but I'm not sure I believe them.

I'm looking for a Sarcoidosis "Specialist" if there is such a thing!

Keep the faith - we're all in this together

BeachBum :-)

2 replies

rreaves
  • By rreaves
  • Posted October 24, 2007 at 1:16 am

It would be great if there is such a thing as a "Sarcoidosis Specialist" who could treat all the related ailments of the disease rather than departmentalizing; pulmonologist, neurologist, cardiologist, etc..all of which I currently am treated by and they all fail to help me feel better. I call it band-aid treatment because they handle the surface of the condition but not the core problem
which is SARCOIDOSIS itself which none of them seem to grasp.

rreaves
  • By rreaves
  • Posted October 24, 2007 at 1:31 am

The symptoms for me were nerve sensations (spasms) on the right side of my body especially my face...they increased in frequency over a two week span and then I had a TGA (transient global amnesia) one week after that I had a TIA (transient ischemic attack)...I was hospitalized for both these seizures and it was determined after much testing that I have incurred 'Benign Intracranial Hypertension' which is a result of having sarcoidosis. The docs have a difficult time diagnosing and pinning the cause of neuro sarc. My short term memory is shaky and my motor skills are slower, and I still have the spasms, this has been twice challenge of pulmo sarc.

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