Neuro sarc maybe? pneumonia maybe?

I have had severe headache problems since i was 10yrs old. I had numerous funky rashes that the dermatologist actually called (and showed me in a book) the "freak disease". They had no clue how I got or how to get rid of the constant rashes. I was not diagnosed with sarc at that time. I had many random issues until diagnosis when i was 19. I started with severe chest pain when breathing and difficulty swallowing. recently ive been having severe severe stabbing pains in my chest on both sides almost directly under my breasts. I had Bells palsy a few times (which i still second guess cuz i was on high levels of steroids which supposed to stop bells palsy). I am now about to be 24 and I have many crazy symptoms, mostly neurological and joint and muscle. about 2yrs ago right after i got married i ended up in er with what seemed similar to bells palsy again but was severe pain and drooping on left side of my face and arm and leg numb too. They never figured out problem and guessed it was sarc even tho I had been told by a supposed sarc specialist at biggest sarc clinic in us in nyc that it was gone and I was being dramtic. I now have permanent nerve damage on that side of my face that causes uncontrollable twitching when i attempt to move face muscles because after the damage my nerves tried to compensate by growing back 1 nerve to control multiple muscles. I also have hearing problems on same side where my ear crackles like a bad speaker when i hear certain levels of noise. I just came from dr today to find i have pneumonia. something feels wrong. i just stopped methotrexate and now have this problem that feels exactly as it did when i was first diagnosed in my lungs. I am confused and worried its back. No one seems to know whats wrong with me and I am so miserable. I have many other issues that will take too long to write but I need help. Anyone have any suggestions of dr's in ny who can help or have a similar experience PLEASE message me!!!!

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Do you have severe dry eyes along with this? do you see floaters in your vision? aversion to light?
sometimes inflammation can get into the eyes and an ocular immunologist is needed to help with this. the inner ear can be inflamed too with sarcoidosis. tinnitus is pretty common. bells palsy is linked from vascular disease related to sarcoidosis with granulomas compressing nerves. a couple of other causes of bells palsy are herpes infections and Lyme disease. Herpes zoster can cause what is known as transverse myelitis and so can Lyme disease. Demyelination of nerves can also cause this as is the case when one has transient loss of use of limbs with Multiple sclerosis and rarely demyelination is present in sarcoidosis of the Central nervous system. Peripheral neuropathy in Sarcoidosis can be diagnosed through a nerve biopsy as can skin sarcoidosis with a punch biopsy.
you mentioned NYEand E. DR Michael Samson is an ocular immunologist there. his contact information can be found at on the specialist list in the PATIENT information section of the site. other specialists in Ocular Immunology are Dr David Chu at MERSI and DR Rosenbaum IF you have eye involvement they can help establish a corticosteroid sparing approach to treatment. often Methotrexate alone or in combination with a TNF A blocking drug such as remicade or Humira are needed to get your immune system quited down and stopping the inflammatory processes.
if your condition worsens, get in right away to your doctor or to an ER.

wish you the best,

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thank you for your input. I no longer have eye involvement in that way the sarc nodules are gone from my eye. I dont need any steroids any more. have been off for 2yrs and i refuse to ever go back because ive never felt so horrible and it gave me osteoporosis at 20. I'm off methotrexate because they do not know exactly what the problem is and if theres a chance i dont have sarc anymore i hate to take methotrexate for years and years and have serious side effects that come with it for nothing. so i came off for a test run. ive had tinnitus since i was young. the crackle in my ear is not tinnitus. for some reason the neurologist wont do nerve testing like that even though its been brought up. I guess he doesnt want to put me through it when its just easier for them to chalk it up to sarc eventho they have no clue. Sarc can be so frustrating. but i have no eye problems like that except some pain behind right eye. my mom also had demylenation of nerve sheath. in the 80s they diagnosed her with MS but it never went anywhere and she also has many of the same nerve problems i do and they cant find why.

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Sarcoidosis and the Body
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