Author Topic: what would you say to your rheumy if he told you  (Read 6289 times)


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Re: what would you say to your rheumy if he told you
« Reply #15 on: February 06, 2010, 07:56:19 PM »
By the way, my GI doc first thought the only thing wrong with me was gastroparesis, but then found out it wasn't gastroparesis proper. My stomach issues consist of reflux, HORRIBLE bloating after eating, nausea, etc., and ever-present constipation. Miralax is my best friend!


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Re: what would you say to your rheumy if he told you
« Reply #16 on: February 07, 2010, 05:59:38 AM »
I wouldnt even waste my time with him. Tell him to get on this site and read some postings. My rheumy runs a huge autoimmune center, as has sjogrens herself, and says
that that stomach/GI tract is a big/common problem with people with sjogrens. I have developed severe gastroparesis and it seems alot of us have a very slow moving

52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements


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Re: what would you say to your rheumy if he told you
« Reply #17 on: February 13, 2010, 09:47:26 AM »
I would get a referral to a GI person from him.  It could be that the specific GI symptoms you are having are not those that are associated with SJS.  For example I have been complaining about muscle aches in my legs.  We all know that SJS can cause this - however my muscle aches were more like tendonitis, not aches like you would feel when you have the flu etc.  The rheumy (not my rheumy but the rheumy who is a professor at our med school and spoke at our SJS support meeting) told me that he had never heard of that kind of leg pain associated with SJS.  I went to an endocrinologist.  The pain in my legs (that I have been having for 3 YEARS) went away 15 minutes after taking my new thyroid medicine - T3.  The T3 cleared up most of the symptoms that I had been attributing to SJS.  I feel a whole lot better now.  I still have dry eyes and dry mouth but not nearly as bad.  My fatigue, dry skin, brain fog etc have all cleared up. 

I understand everyone's frustration with their rheumys but at least this guy is admitting that he does not know how to help you.  My rheumy recommended an endocrinologist who had also been a professor at the med school and that Dr. is the one who fixed a multitude of problems by properly treating my thyroid.  If my Primary care physician had not thought she could treat my thyroid and had sent me to an endrocrinologist to begin with I may not have had to suffer with all those symptoms for so long.  There is a lot to be said for a Dr. who has enough self confidence to admit they don't have the answer.



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Re: what would you say to your rheumy if he told you
« Reply #18 on: February 13, 2010, 11:13:37 AM »
I have come to the conclusion that we makes too big a thing out of idiot doctors, just because someone is a doctors doesn't mean that he's not a __________ (fill in the blank).  I have worked with a lot of _________ and have family members who are ________, don't foreget about your boss.  So, it's only natural that a certain percentage of doctors will be _________, I would guess about 25%, which is a lower percentage then is was 40 years ago.

Unfortunately we have to pay to find out if he/she is an __________, just part of the game, you must become your own health advocate, keep records of all you medical tests, a printed list of medications (not a bag full of bottles) and don't be afraid to bring articles from respected research institutions and hospitals or Sjogren's book.

I never go in as a "know it all", who likes a know it all, right?  If you don't like the tone your being spoken to simply asked, have I done something to offend you?  This throws people off their guard, they always say "no why" and you can tell them in a nice polite way.

If I'm told something I feel is not true or contrary to I have read, I act confussed (it comes natural) and ask them to explain what the articles is saying that I have in my hand and that it seems to be stating something contrary to what the doctor is saying.  Doctors don't like confrontation, but if all else fails I can turn on a doctor like a pit bull on a poodle, I'll save that for another time.