What should i do to find a new internist....


I interviewed MANY new internist by phone because i need a new one to manage my overall health problems. so as i called around, i wanted one that was at least familiar with RSD. So finally i get one on the phone who says he is familiar with it, he is a cardiologist and an internist and he is in practice with his wife who is an internist. Thank God i dont have any heart issues..but i thought this would be a good mix of knowledgeable people. So I have abdominal RSD caused by gallbladder surgery i had 6 years ago. My abdomen is terribly swollen..85lbs of it. so when i see the doctor last week i told him what my pain doctor said...that i should be put in the hospital to see if they can put me on IV diuretics to try to get me some relief.

He says NO. that he didnt think that would help me and that insurance wont pay for it. Besides having all this swelling around the center of me ...i am very overweight. he goes into talking about gastric bypas ect ect...i said not only does my insurance not cover it...but i cant have surgery ever again...it will kill me! I died after the last surgery and they brought me back...im not chancing that ever again.

Then i told him i was fat healthy and happy before i had the gallbladder surgery. no swelling no anything! the RSD has caused all these health problems i have now. well that went over like a lead balloon! he spent alot of time with me...maybe almost an hour...he goes on to tell me he has other patients that have been his clients for 20 years that are in the waiting room waiting for him...so that was that. then i asked him about 2 meds im on and how will he manage them...he said he wont..go see a rheumatologist, where they first started me on them.

the prednisone and imuran had controlled my swelling early on...but now i think they are doing more harm than good. so i am going to slowly wean myself off. i am on 30mgrs of prednisone a day and the imuran i started at 300mgrs a day now im on 150 so i will lower that over the next few weeks.

you all have way better advice and care more about me than the doctors so i look forward to your help!
thank you all
Lori

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.

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

I'm sorry to hear that you are going through this Lori. In the past few months I have been bounced around from doctor to doctor trying to figure out what has happened to me since I had a block done in January. I have so many new problems now and after seeing 2 neurologists, a rhuematologist, an infectious disease doctor, two pain doctors (switched after the one who performed the block refused to see me anymore after the complications), and two primary care doctors (switched after the first one told me that only a chiropractor could fix my RSD)...no answers. The new primary care doc is compassionate and has been very helpful in trying to figure things out. I'm headed back to the pain doc on Wednesday to see what we can try to get at least the pain part under control (or at least slightly better).

I definitely would not continue with that internist...that's just unacceptable. If you can't find one who can really oversee all you problems, then you would be good to get a compassionate one. One that can take the information from the other specialists and take the time to go over things with you and be there for emergency situations when you maybe can't get in to see a specialist right away.

I will be thinking of you and hoping that you can get the care you need soon. You shouldn't have to deal with this alone.

Thank you Catra

im sorry for you too! Sometimes i think about taking a video of my self before i got sick to the doctors that i see...so they can see that i was once vibrant and strong and walked tall and was beautiful! when they see me now,
i walk with a walker on wheels, completely bent over pushing the walker along with all my weight from my upper body on the hand bars of the walker.
my stomach is enormous mostly on the right side of me. I wheeze when i walk because all the extra weight is stressing my lungs...i look like a freaky mess! how my husband kisses and hugs me everyday is unbelieveable.

anyway, thank you for your reply! you are in my thoughts too!
hugs and blessings
Lori

You are so kind. I have RSD in my inner ankle/foot/calf but now spread to both legs and up the knee. Also in my eyes and possible ear. I have been to so many neurologist,pain doc,internist I could go on. I have PN too. I will say that my best pain doctor even better then at Cleveland Clinic and UCLA came from a teaching hospital in my home town. He was the director of the pain area and was an anestesologist. Have you called the pain/anestesolgist dept of a teaching hospital in your area and explain you have RSD and does any pain doctor work more with that?
As for the swelling I am not sure but I wonder if once your off the med for awhile your body may adjust and even out. Though the amount you have of swelling sounds so extreme that it seems it is more then just meds. I do wonder though if you can find a treatment to help the rsd pain if it will help the swelling. Like for ex one girl who had the coma which I am not suggesting just sharing this story but anyhow she had horrible sores over all her body and they cleared up with the treatment and her pain did as well. Am I making sense?
Hang in there and thank you again for your thoughts

Hi Lori,

How are you doing? Any new developments with your condition?

My heart just breaks for you. I wish I could help in some way.

Just wanted to say hi and hope your feeling better.

Gabbycakes

Hi Gabby

well as exhausted as i am by thinking about RSD and dealing with doctors...i asked my local pharmacist who is always sweet as can be to me, i asked her if she could recommend i good internist and she said do you know Dr. Rustogi, she said he is wonderful and so compassionate. i remembered his name because he was assigned to me as a hospital doctor several times over the years when i have been in. yes he was wonderful. so i have an appointment to see him May 6th. i just need some one that can connect all my dots and make sure that i am getting all the bang for my buck from the doctors i am seeing and all the meds i am taking.
so thank you all for helping me press onward and not settle for doctors with bad treatment!
blessings
Lori

Hi Lori,

So glad to here you got a good recommendation. Pharmacist know the best doctors.

Please keep up posted and enjoy the long weekend.

Gabbycakes