Re: Digest Number 1065

[Guest guest]

hi Rebbeca and all you people that are reading this,i just wanted to tell everyone that i am doing so much better,and to the lady that is having the lesions on her legs that are so big and deep? sounds just like mine,also mine started the same way, all the itching and hurting was awful,it was over a year that i was sooo miserable with this stuff,my legs are still red,and i still have a few very small places that have not healed all the way,but they are so much better then they have been,at least i can sleep at night,so hang in there ladies ,and i am still on the predesone they are weaning me off now,am down to 30mg. a day now,i have never in my life had anything like this,if i can answer any questions for anyone,just let me know,thanks everyone for all the support i have had from the group.

Re: Rheumo visit for SarcoidosisDear Dreamy, In the last 10 years I have had every kind of Dr you can think of,

because of my sarc... I have had blood tests I didn't need, medicine that did no good, and etc..etc..., I hit the jackpot when I met my rheumy, he is kind, wonderful, takes lots of time with me etc. I also had legs the size of Texas, vasculitus, EN, and severly swollen ankles. I did not want to do what he said at first, but did, which was prednisone, and indocin for about three months. It takes me forever to wean off prednisone, and it also makes me gain weight, not bloat mind you, but fat!!! I did as told, and once I got off the prednisone, and felt in much better condition, he started me on Plaquenil, prn Indocin, and advised me to stay off legs, stay out of heat, and not to worry about my weight, although he thought I would feel better if I tried to lose some. I have subcutaneous sarc, in addition to liver, lungs, eyes, and skin. Keep a diary, and ask him his honest opinion. If pain is a real issue, than address that with him,

that is a big concern, A body that is in pain, does not heal as fast or as well as someone feeling up to snuff. Ask about different meds for the sarc, is it sub q sarc, do you have granulomas in your bones, etc.. I have a spot of sarc in abone in my rt heel, sometimes it flares up, and I can hardly walk, you would not believe how many times I have been treated for a bone spur, until I finially saw my Rhuemy, and he did an xray. I know that I am rambling on, but sarc has so many different faces. My GP told me in that when he was in medical school they had a saying, if they couldn't figure out what was wrong, blame sarcoidosis. It is very important that you feel comfortable with your Dr. If this doesn't happen, you may have to find one that does. My Dr. is a 4 hour drive from my house, but worth the drive. Kris...EN, sarc, and chronic fatique...but I think I was born that way.LOL deanfm6@...

wrote: & Sarcoid patients, I'm at a loss of what to do. After my dermatologist told me what the nodules were and called me back after discussing the case with my rheumoo & IM doctor, I pretty much said, "to hell with it!". I didn't contact any doctor for sarcoid treatment, however, yesterday my rheumo's receptionist called to make an appointment with me. I'm supposed to see him on Monday at 9:30 am and I have no clue what to ask him. I'm sick of going into doctors feeling desperate and hopeless and having them treat me like, "you are an interesting case, but oh well." and then shove me out the door. I demand to be involved in my own care this time around and he will either treat me with respect or I'm out of there. He's arrogant and quite frankly, I'm not sure what to expect this time

around. Because he treated me for the "Rheumatic Fever/Strep infection", I have decided to give him ONE more chance. Can you PLEASE help me think of questions to ask him about my care so I can be prepared, which will hopefully show him I care about my own health. God Bless,Lorri