where can i find one? please, i live in flint, mi. and am 65. i have had 23 lumps removed to many now to remove all but i am having other related problems fom it. my name is henrietta morissette and i would like thee name of a dr fo dercums
Dr Herbst in New Orleans is doing quite a lot of work with DD patients. I cant attend as i live in the UK and maybe one day get the cash to visit her. You have more or less do as we all did and educate you exsisting DR on Dercum’s. Some Dr’s look at us as if we are making it up and its all in the head, just move onto the next one if you experience this. Lucky for me i found my Dr understanding she googled ‘painful lipoma’ when i went in to complain about the pain i was in, at first she sent me home with painkillers, and rang me the next day and said i may have a condition called Dercum’s she basically knew all i knew from the internet.
Hi I am so sorry that you have DD. Google Dr. Karen Herbst and you will find the only doctor that we know of who is working on DD. She has a web site now and you can print out her suggestions and show them to your doctor. She is in California Geordie. She is willing to advise your doctor. She has a research questionaire that you can fill out when you get it off her web site and I made a copy for my rheumatologist. I am 62 and live in Ohio. I have had DD for 40 years I also have fibromyalgia so I was not diagnosed with DD until last year. This web site is great and if something is found to help us…it will be written about on the web site and in the meantime we support each other in dealing with our horrible pain. Try to keep your spirits up. I go on Medicare next year and my meds will put me in the “donut” hole in a month…then you come up with like $5000.00 for yourself and your husband…not to mention the Medicare fee and the Medicare supplement fee. So far from what I have been able to figure out the only thg docs can do for you is give you pain meds and muscle relaxants but if you get DD lipomas removed it just makes more grow in where you have them removed. Good Luck and Hugs…
Good Luck, There a very few Drs who have ever heard of this disease and they are mostly dermatologists or Endo drs.
We have to do our own research and collaborate with the leading researcher in the US which is Dr Karen Herbst, in San Diego. Her info and other links to resources, stories of others experiences, suggested treatments, etc can be found on http://www.dercumshope.org.
Dr Herbst website is on there to. We all have had to print up info and take to our drs and decide if they are willing to help or if we go to the next one. We rely on each other for info support and our sanity because we are blazing a new trail in unknown territory here. Dr Herbst will see you or can have our Dr. collaborate with her, by phone or email. She is busy though and it may take awhile.
At this time, there really is no treatments other than to treat the symptoms as they arise and try to keep pain under control. I would say see a pain management clinic. and then go from there.
Please read past posts on careplace. Research & Research. We have already travelled the path your on and can maybe save you a little time and frustration though. Right now Noni juice and grape seed extract seem to be helpful to some. I take cimetidine, progistimine, anbien and darvocet and an anti-depressant. I saw my GP and went over all these with her before taking any medication or supplements as you should always check with your Dr.s.
I wish you the best of luck on your journey. May it be pain free as possible.
Love & Hugs
Is this an error? Dr Karen Herbst is in San Diego. Is ther another Herbst In New Orleans we don’t know about?
not new orleans…i couldnt remember…blaming the brain fog. hahaha…sorry for the confusion.
Oh Thank goodness …I thought she moved or I was losing it!!! Not that I’m not, but had me going there, Kiddo!