FiorLabhair's Journal

The Rheumatologists think I have Sarcoid, or another Inflammatory Auto-Immune disease, (based on the fact I had Erythema Nodosum, and Optic Neuritis, Swelling, And Blood tests that point them in that direction, like the Ced rate being elevated for 2 years now.) They still don't seem positive it is it, but based on history they seem to think it is probable. (And I am like, you couldn't have seen this last year when I saw you?) And they also think I have Fibromyalgia.

They (Rheumatologists) have started me on Methotrexate http://www.nlm.nih.gov/medlineplus/d...r/a682019.html ,which is scary as it is used to treat Lupus, Cancer, and other scary sounding things. (I have been on it for 5 weeks now, only 3 weeks on the intended dose, though.)(They can't do steroids, or don't want to because I had such massive doses because of the Optic Neuritis so they are going to try Methotrexate which they say won't help with the pain as damage has already been done. It makes me feel a little hopeless though. As they have tried almost everything on me for treatment for pain and nothing seems to work well...The steroids were wonderful though.)

The methotrexate might be doing something. I no longer feel like I need to take double the amount of pills (I haven't been, but you get to a point where you feel like it might help) to get to a tolerable pain level. (And by tolerable I mean I am not screaming every 5 seconds... but it is still not improved enough for me to function properly.)

We will find out Nov. 14 (appointment with Rheumatologist) if the methotrexate is making any improvement in terms of my blood tests, which will be interesting to see. I just hope the pain keeps going down, and stays that way. If anyone has any ideas or suggestions please let me know.

Is it possible? Could it be? Did they figure out my problem?

The Rheumatologist I went to About two weeks about thought I might have Rheumatoid Arthritis, but when I came in Monday for the Ultrasound on my feet the man who was going to perform it took one look at me and asked: "How long have your parotid glands been swollen?" I was confused, but he did a few other tests (feeling glands, and asked me about my history) and then did the ultrasound. The ultrasound showed nothing of interest so I apparently do not have RA. (Which is good.) But now they think I have Sarcoidosis due to my swollen glands, my history of Optic Neuritis, and Erythema Nodosum. They say that even though the Chest X-ray I had was clean, I could still have it, as 5% of people who have it do not have lung involvment. This diagnosis could explain the foot problems, the Optic Neuritis, and the Erythema Nodosum... so we can hope. The next step is to get injected with radioactivity on Friday, and then get scanned on Monday to see if my glands are glowing... if they do, then I have it... or that is what they are thinking. I might have to have a biopsy... possibly a needle biopsy... this part I do not like, so I am not going to think about it.