This is typical of the way my life goes. I finally went to a “pain” doctor and he ordered back x-ray and an MRI. I had them and have be anxiously waiting for a call with the results. Finally, some help, you know. I called and they said they were waiting on the MRI to be read. I got a letter from his office today and he quit and closed his practice. Hey!! Where are my results? I think pain doctors get a lot of dopers going to them and sometimes they can’t keep their hands off the dope themselves. We had a case here in Columbus where a doctor was taking dope from people’s implanted pumps. He even took stuff out of his own father’s pump!
Try to find an internist. That’s who finally diagnosed me after 5 years of crap like that! Internists are born curious about this stuff. Mine didn’t know about Dercums but he diagnosed me in 6 days and has studied everthing he can get his hands on and he has talked to Dr. Herbst several times.I am lucky to have my own team of doctors who give a crap. You will too. Don’t give up. Ask around when you call places. Call your local hospital and ask for the best internist or rhuematologist. Go for it!!! good luck
Stonel is right…my Doctor that I thought wasnt interested in looking at any of the stuff I brought him on DD is and internest and it turned out he agreed with everything…It helped too that I had an eye Dr look at why my eyes are shutting and he found lipomas there too…Good luck…Maybe try to find a Dr that is a Christian based Dr…I dont know if that really helps but I dont think it cant hurt(my Dr is - I go to a clinic for low income people with no insurance that is a church based organization)…
For those of you who are attempting to get on disability, I want to give you all a ray of hope. A few years ago I applied and was denied, so I went to a couple of different disability attorneys that refused the case, because DD is too rare. So I still filed for an appeal, I went in with no attorney to see the judge. I was a nervous wreck, but what did I have to lose? I took the judge all of the information I could find from the internet and told of both my good and bad days.
Then I asked him if he would allow me to show him exactly what I am talking about. At first he was shocked, but then he allowed me to show him my leg. He thanked me for being so honest and forthcoming with everything I knew and even that that I didn’t know. Six months later I was awarded full permanent disability. Just so that all of you know there is some hope. God bless you all.
Nadine
Thanks for all of your support. I keep reading all of your postings as it is so great to know that I am not the only person with DD. It really helps and you guys I want you all to know that I feel like I have known all of you for a long time even though I just joined the forum. I really feel all of your pain and respect your strength and desire to find some help. I called the pain doctor’s office today and he will see me once before he closes the office to get my results and he is considering several offers to join practices in this area so I may still be able to see him.
Glad he wasn’t closing his office because he was in trouble. I am trying to see if I need any back surgery or if he can do something to help my neck which kills me. The lumps on my neck are so big you can see them easily. I do have a rheumatologist who diagnosed the Dercum’s recently (at last) and he believes it is a disease so that is good after 40 years of a diagnoses of fibromyalgia, which I have also, I think. I got SS disability bases on my many illnesses after I consulted a psychologist for depression and anxiety related to the constant pain. My attorney said that they would not approve me based on physical problems alone but need a diagnoses of mental problems also.
SS sent me to their own psychologist and he agreed that I could no longer work. I am in pretty bad shape. I think working when I was so ill made everything worse. Now, my diabetes is out of control. Yesterday my ankle flared up and I had to stay off my feet again today. A flareup usually lasts about a week. I never know which pain is related to the DD and which is due to another problem!
GrandmaSylvia:
Don’t feel alone! I’ve been at this doctor-go-round for years and was dx’d in 2004 (best I can remember). I went to 1 pain mgmt group and all they gave me were shots that didn’t work. I saw the dr 1 time (the first time) and after a disagreement with the way they were handling things . . . I fired them! Started at another pain mgmt dr’s office saw the dr the 1st yr every month, changed meds around to different combos but after that her practice grew and all I saw the next yr was NP, which was kind of okay but she saw all of the problems with legs swelling developing and she just asked ‘what can I do?’ Duh, your suppose to be experts, just give me something for breakthru pain. She increased my Morphine to higher dose to take all the time, not what I asked for plus I couldn’t tolerate the higher dose b/c of side effects. So, reduced back down to previous dose and left it there for 3 more mos. Next thing I know pain mgmt dr came in room on visit and sat down, she saw legs, then she said, nothing more we can do for you, your pcp can prescribe your morphine each mo and it will be one less dr you have to see and pay for. So I guess I got fired cause I wouldn’t take the higher dose, I don’t know but what I do know is that there was much much more she could have tried and didn’t.
So I quit seeing all my other drs and just consolidated into my internist/pcp who took me out of work, 1st considered dx, kept sending me to specialists until one found dx of DD and had been treating me for 5 1/2 yrs (started seeing him 6 mos after he started practicing. During that time period, he was suppose to fill out my LTD paperwork and I had been asking him about it for 4 mos. On my 1st visit with him after consolidating drs, he took biopsy of skin which he said he didn’t think was CA, I told him I thought it was. Next visit, it was CA so he was referring me to dermatologist specializing in skin CA, told me again that he had filled out my paperwork, it was medical records fault ins co had not recd. Went to have surgery to remove skin cancer, then follow up to remove stitches. Got call from ins co that they were going to close my LTD claim file unless they got the paper work w/i next week. Called dr’s office, he was on vacation, I panic’d cause no way would be done w/i 1 wk (keep in mind he’d had these forms for 6 mos at this time to fill out and kep lying to me that they were done, etc.). I spoke with nurse for doctor covering for him, next thing I know they said they would have my doc fill out p/w 1st day he was back and they would fax to ins co. He came back from vac on a Monday and I called on Tues and asked for his nurse (she had been on vac at same time), I was informed my doc no longer worked there. Just told that he came back on Mon and turned in resignation on Tuesday and left. They did give him my forms to fill out. 3 days later got them 75% of the forms were blank and what he did answer was incomplete. Called practice and managing doc saw me and filled out p/w (some of it wrong) so I could get something in that wk.
Now keep in mind that pcp had sent me to other drs to try to find out what was going on with me. Sent me to rheumatologist & he dx me and tx’ed me for about 2 yrs. Then he said really wasn’t his specialty and he’d tried everything, I needed to go to large diagnostic clinic; i.e., Vanderbilt, Emory, Mayo. Went to Mayo, FL, waste of 15k and 3 wks time. Came back, saw rheumatologist and he said that they had DX’d me wrong, plus they ran up a huge bill I had to pay most of b/c they were out of network. He refuted their dx and said no need to see me anymore, nothing he could do, he’d tried and he was getting ready to go to Iraq any day. Got notice 1 wk later he was going to Iraq by end of mo. would be gone 1 yr. Later found out he came back after 6 mos. but only found out he he came back early after he flipped out, started talking child pornography, had affair with patient, etc. Definitely not the same guy I saw b/4 Iraq. So he was the first dr down (lost his license). Then pain mgmt (basically fired me). Then pcp quit practice, never got explanation and don’t know where he is.
So I’ve seen 3 go in odd ways so you got 2 more to catch up! I think we’ll find that we loose more as we continue on with need for regular tx. When I never had to go to dr, had same dr for 19 yrs, go figure!