Sorry if I already asked you this Tammi, but, what were his symptoms, how was he diagnosed (spinal tap?), and how is his neurosarcoid being treated currently?
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Hi Ricky S, thanks for sharing your ALL TOO FAMILIAR experiences. At times I thought you were talking about me! I am gonna turn 64 in 3 weeks (god willing). I too live in the South (Florida, Brevard Cty). Was diagnosed ~10 yrs ago and it wasn’t too hard getting SSI ability primarily because at the time I was a good candidate for a lung transplant. It started in my lungs and has been getting progressively worse and worse over the years. I describe the pain as like being tackled by the entire Dallas Cowboys (boo) defense. Heat and humidity is absolutely murderous on my lungs. I more or less have to hibernate in the summer when we’re not up in New England. Thank goodness we were able to purchase a summer home up in Western Mass several years ago (Berkshire Mountains) where I met my wife to get away from heat for a while. Just got back, was a great break, it was very cool in the morning. How cool was it you ask?!; So cool had to start a fire in the fireplace every morning to take the chill out of the air. Gonna return hopeful;ly in a few weeks after getting more Dr appointments out of the way. My prostate cancer appears to be spreading but don’t believe it’s related to the sarcoid. May have to start radiation treatment but that’s no big deal either.
I’ve found hydrocodone a very very effective pain reliever but am anxiously awaiting my medical marajuana card (non-smokeable and without THC type) to see how effective it might be for pain management and to get off script pain meds. I’ll keep you posted if interested.
No hearing problems thus far but have been legally blind in right eye for some time now left one still good knock on wood. Only other complications have been minor joint pain and skin problems no big deal. Am in the process of making another appointment with Mayo in Jacksonville to see if it’s starting spread to my brain. (nuerosarcoidosis). Pretty sure it has. Do you know anything about nuerosarcoid?
Thanks for the info about steroid induced glaucoma. I’m gonna talk to my pulmonologist about it at my upcoming appointment with him. I sure hope ocan stay on it.
p.s. hang in there a please stay in touch.
Can I also get an update as to how any of you “vanilla flavor” sarcoidosis sufferers are currently doing. I’m now probably in my ~12th year and getting rather rapidly progressively worse especially living in Florida the summer heat and humidity has been absolutely brutal.
I’m currently up at our summer home in western mass to get away from the Florida summer heat/humidity for a while which I highly recommend especially for folks who live in an extraordinarily hot/humid climate.