Re: Re: dr appt

[Guest guest]

Hi guys,

Co-moderator

Subject: Re: thyroidTo: Neurosarcoidosis Date: Friday, September 19, 2008, 1:00 AM

,Thanks so much for the advice and the great info. I do not have provensarc. It is a presumptive diagnosis and the working diagnosis duringthe cytoxan is lupus of the nervous system. I do not have proven lupusof the nervous. The can't seem to prove anything. All of my sumptonshave now returned and it really sucks. I actually thought while I wason the cytoxan that I may be able to go to work or back to school. Now,I am lucky to get on errand done during the day and maybe make dinner atnight.I did terrible on Imuran and she did mention cellcept when we spoke. Ithink she is doing the steroid injection as a stop gap until we decidewhat to do. I will probably have to go back to Hopkins again before shewill do a long term therapy for me. She wants me to see a rheumy therein conjunction with Dr , the neurologist. I am just tired.I am going to talk to her about the "all

inyour head" theory and let herknow that she can speak to my therapist. When this issue first came up,I told them to give me the meds to fix that problem but everyone backeddown on that. I will sign a release for them to talk. My anger at thisis just about sky high. I have been so sick that I have not been ableto have a life for over 4 years. I have two new grandchildren due nextyear. Why wouldn't I want to be well so I could enjoy such a gift. Themedical system is such a friggin joke.I hope our next visit will be more productive. I appreciate all theinfo and will take it to her.Thanks for everything.Terri G.>> Sarc can effect the thyroid as well as the parathyroid glands. Theparathyroids control

calcium levels.> Why did they decide Cytoxan wasn't for you? I know you were doingwell on it. What about the other BRM's? Enbrel, Humira or Remicade--and now there is a new one-- don't know much about it. What aboutImuran or Arava or Plaquenil and Methotrexate? Have they given theseany thought.> So the MRI showed arthritis-- they use these same drugs for that. Check out> www.ArthritisToday. org or and look up the drug guide. There is somuch wonderful info.> Here is an excellant article on sarcoidosis and the endocrine system,it includes all the glands that are controlled (including thyroid) andexplains alot of what is going on.> http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print itout and take it with you to the Rheumi.> It sounds as if she wants to rerun all the

tests and figure outexactly what is going on--- that's great if you have good insurance, butif you already have biopsy proven sarc-- it's not totally necessary.> I know she wants to make sure that nothing is "masking" what is goingon-- so she doesn't get any false positives (or negatives) behindwhatever autoimmune process is going on. She'll want to exclude all theother possiblities before she treats with more than pred.> I wouldn't worry about the "it's all in your head" theory-- just lether know that you want her to help you get this puzzle figured out-- andthat you know that it's not in your head. If you are dealing with somedepression, it would be secondary to whatever is going on-- not the rootcause of what is going on.> Remember that you understand that with chronic pain, chronic illnessthat yes, depression can become an issue, and that you know that yourseratonin and norephnephrine

hormones can get whacked out by the chronicpain and disruption of sleep cycles, etc-- but that "if you knew whatwas going on with your body, and had some relief via treatment-- andCytoxan was doing that; that you'd be alot more comfortable. With theprevious doc, he wanted to go to the depression issue and blow off thesarc induced problems (arthritis) and you know that is not right." Don't back down-- work with her, talk to her, and let her know that youstudy on this disease--and you want her to be part of your healingteam-- not the competition. Get her on your side!> Hope this helps,> Tracie NS Co-owner/moderator>>>> thyroid>>>> Hey Guys,>> Is the thyroid suseptible to sarcoid. I am still having lots of> negative blood tests and MRI's but the vitamin D and thyroid are off.I> am starting up with this new rheumatologist and my first visit she> brought up the fact that one idiot thought it was in my head and also> said that I looked healthy as a horse. Doesn't bode well for me does> it?>> I am trying not to get upset; I am seeing her next week. She doesn't> know that I know the MRI's just showed arthritis. Another doc let it> slip (they were not aware I had not received the results yet) during a> visit. She is going to let me have a prednisone IM injection but she> will discuss treatment with me next week.>> Please say a prayer for me that there will be some type of resolution.> I have accepted the

fact that I will not be able to get Cytoxananymore> but there has got to be something out there for me. I had even> entertained the idea during the cytoxan treatment that I may be ableto> go back to work or to school. That is out now....>> Well, thanks for listening guys. I really appreciate it.>> Terri G.>

[Guest guest]

Hi Debbie! Whats up?

Hugs, Tracie

thyroid>>>> Hey Guys,>> Is the thyroid suseptible to sarcoid. I am still having lots of> negative blood tests and MRI's but the vitamin D and thyroid are off.I> am starting up with this new rheumatologist and my first visit she> brought up the fact that one idiot thought it was in my head and also> said that I looked healthy as a horse. Doesn't bode well for me does> it?>> I am trying not to get upset; I am seeing her next week. She doesn't> know that I know the MRI's just showed arthritis. Another doc let it> slip (they were not aware I had not received the results yet) during a> visit. She is going to let me have a prednisone IM injection but she> will

discuss treatment with me next week.>> Please say a prayer for me that there will be some type of resolution.> I have accepted the fact that I will not be able to get Cytoxananymore> but there has got to be something out there for me. I had even> entertained the idea during the cytoxan treatment that I may be ableto> go back to work or to school. That is out now....>> Well, thanks for listening guys. I really appreciate it.>> Terri G.>