Oh Daniella!
thank you for reaching out to me and feeling my frustration! I feel like you have been through what i am dealing with exactly! after i had my gallbladder operation and started to swell...the doctors all thought i had a bad infection..but nothing helped...finally one night as the swelling grew up towards my lungs, i went to the ER again and there was a doctor who thought i was having an allergic reaction to injections called Lovenox that i was given around my navel after th operation. I was in the hospital for 7 days after the operation because of my pain and swelling that i was complaining about. SO he gave me 50mgrs of prednisone to start took that for 3 days and then tapered off. the next day after the first dose 10lbs came off, the same the next day....down to about 10lbs of swelling...i thought this is great, im cured! AMEN...but then when i was done with the prednisone the fluid started coming back...i went to my internist who sent me to specialist after specialist....i wound up on 30mgrs a day. the Imuran i am taking was from the last rheumatologist i saw for almost 3 years...he thought i had panniculitis but after 3 years he said no you dont have that i was wrong! so now im trying to take myself off both of these meds. when i have tried this many times in the past i would swell more. but now im thinking that the meds are doing more harm than good and if i can get myself off of them, maybe my bodies natural systems will take over and control some of the fluid.
i am taking the Neurotin but it may have put some weight on me but i cant tell. I have been to Hopkins twice..once to immunology and allergy...they had no clue what was wrong...then to their rheumatology clinic when the georgetown doctor gave up and said i dont have panniculitis..he sent me there for help...they didnt help. I cant afford Mayo and i cant fly.
i dont like this doctor i saw last week. if i cant find someone who can over see all my issues...maybe i should go for a compassionate person who will do well with my other health problems. My pain doctor who is new...thinks there should be some way to get the swelling of me. but the Neurologist i saw was clueless...he wants me to go to a university research hospital, when i call those hospitals, the were clueless about RSD.
SO since you were so very kind to reply to my post, is there anything that i can be thinking about for you with your condition? where is your RSD? tell me about you please...
Lori
Quote:
Originally Posted by daniella
I have seen 3 new internist since I have had this condition for the hopes of getting one to manage my case. Well none have done that. They also say they don't deal with pain and to see a pain specialist which I have or refer me to another specialty. So now I just use my internist for normal medical issues not related to the rsd. I think for the rsd it is so key to work with someone who deals with rsd a lot.
As for your swelling did you notice more when you started any new meds? Did you start the prednisone after the swelling? What about other meds like neurontin etc? I was told on here that causes swelling.
Have you thought of going to a hosptial such as Hopkins or Mayo? I heard and I don't know this for sure that a group of speciality doctors look at your case. I think what is so frustrating is that when you go see a specialist they don't go outside their specialty and often don't consult with your other doctors properly. Sometimes i feel there are connections that are missed.
I am sorry I don't have more to offer.
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