What kind of doctor helps the most?

Dercum's Disease
#1

As the subject says…

What kind of doctor helps the most?

the only reason i ever got a name for this disease is a neurologist that I was referred to ran out of the office to catch me (after he told me he can’t do jack) and gave me a bottle of Lyrica and said it could be Drukums Disease.

Yes, I mispelled it. That is how he said it. I told me primariy doc (whom I haven’t seen in 2 years), and he said Dercum’s but couldn’t find ANYTHING on it.

Now, I’m having another ‘bloom’ and need meds… and the only meds I know of is Lyrica.

I wouldn’t mind seeing my old primary doc, as he has a sliding scale… but he will not hesitate to refer me to a specialist.

Since I am literally dirt poor (living with my girlfriend and her mother who literally just got laid off), I was hoping to avoid wasting money on useless professions…

no disrespect intended to any doctors in the house… I just can’t afford wasted visits…

I can’t afford any visits.

#2

I had the good fortune of having help from cold here on Careplace to find an actual Dr that knows about DD…I am going to him next Friday …he is a dermatologist…I guess what I am saying is do some calling…And I have no insurance either and a husband that works in the construction trade so that also means little money coming in right now…I am using a credit card to pay this Dr but I was diagnosed by the Dr I started going to at a local Christian based Health Care facility…The fees are based on income and I took all the info I could find with me but the best info was what Dr Herbst wrote…Her web pages…her article from last December and any emails she had sent me…I hope you find some relief…I am still yet to …the pain now is not responding to anything that the Dr has given me thus far…I feel so old and fat…My pain is increasing instead of decreasing

#3

I feel totally hopeless.

The ship is sinking and I just can’t find a way to tread water…

I need to find a doctor locally.

I cannot find a way to contact Dr. Herbst (spelling?).

I live in Tampa Bay, Florida. Seminole to be exact.

I gotta find a way to get some help here… fast.

there are no jobs. there is no ‘side work’. I cannot even get a response from my previous doctor anymore without making an appointment that i have to pay for in advance.

I even resorted to scouring the web for his personal email address. Found it, still no response.

I’m scared ----less to go through the ‘County Health Insurance’ again. Not to mention, I only have about 6 months of use left (I was told 2 years maximum coverage, after that- yer outta help).

The worst part is the nervousness about looking for work causes me so much pain… is there a place to find employment for persons with undiagnosed and uncaredfor diseases?

I still have no diagnosis, and the neurologist as well as my primary doctor both told me they will NEVER give me that diagnosis…

“you are just too young to have documentation stating you are helpless.”

“a positive outlook might just be all you need to get out of bed.”

So, while my primary doc (who I haven’t seen in 2 years) is actually really nice and supportive, he outright refuses that diagnosis on false beliefs.

I’ve even pondered bringing a tape recorder and specifically starting this conversation with him to record… but what good would that be?

My actual family is all dead, with the exception of a lunatic mother (absolutely no help there… leaving 2 weeks ago was the best thing I could ever do for my health), lethargic half brother (who rarely does anything), and older sister with her own issues (and she’s in another state and has a family of her own).

The only physical help I got is the most wonderful woman of my life, Amanda. If she didn’t make her mother take me in, I would be homeless right now.

And if she hadn’t been there with me through the surgery, the doctors, the psychiatrists, etc… I fear I would not be anymore.

Side note-
anyone got ideas about Dr. Herbst saying our tumors have a higher heat content that normal fat? when I get upset, I get HOT. I mean, me getting HOT let’s me know I’m getting mad…

Does anyone else have problems with anger issues? My fuse can be so darn short… thank God Amanda loves me so much…

Moodswings suck.

Is anyone here… um… um… ‘younger’? I’ld like to know about moodswings from people like me… but I don’t know how to isolate DD as the cause…

I don’t have to feel useless to get hella mad for no reason. I don’t need anything but a spike of blood pressure (and mine is so messed up I gave up on the store tests).

hehe… no worries I am rambling here… I made this thread!

:slight_smile:

::learning to be thankful for every single last victory every day::

#4

Ben, Thats why we have these support groups, its so we can ramble away, its often a case of ramble on or hide, and rambling is good for you. I live in the UK, where our Health Service is much different from yours. I seen my GP and she diagnosed me, I have now educated 3 doctors. I still feel like i am banging my head against the wall though, I was sent to a Dermatologist she just said, there is nothing I can do as the DD is under the skin and Derms only deal with skin issues. No good there. i only wish i could see a neurologist or rhreumatologist, but its hard to get the GP to refer me. If I went private, it would cost me, which I dont have the money to do that. I am over 18stones in weight and was even told I am not big enough for gastric banding surgery…hmmmph. Anyway, enough of my rambling, I do hope you get some where and soon, you really need anti depressant meds. They will help you cope with all this and will help your anger.

geordielass

#5

I’m sorry you are having such a hard time. I hope you can stay positive and move forward - doing what you can to help yourself. I wish I had answers for your situation.

About the “What kind of doctor helps the most?” question – The only one I saw that helped me was a nuerologist. He didn’t really diagnose me, I just diagnosed myself! I told him that I was sure I had Dercum’s and he looked over the webpages I printed out. He was the only one who was interested in learning. The only one I saw that had seen patients with painful lipomas. He was grateful for the info and was happy to learn about something new to him (unlike the many doctors I saw before that one, they all had the attitude that lipomas don’t hurt so I was just a nut)

#6

Hi!

Life is tough!

Okay take a long breath first and know that You are not alone.
This is real. And we know what You are going through.

You are going propably need two doctors: One who lives near by You and cant take care of the acute.
And One who is specialist in DD.

Talk with people what kind of doctors they have.
You need a doctor that is happy to admit that he/she does not know everything but is keen to learn and has empahty.
Painspecialist, neurologist or a general practicioner.
Somebody You can get in touch quite quickly.

This will take time but it is better to make the right choice that to come home from doctors appointment crying.

Make copies of DD info ( I will mail you an adress too) and give it to the doctor, preferably few days before.

If it woun’t work first time try again again and again!
Get help from church, other organisations to get the money
if needed. (We should start a fond for DD sufferes so that they can get doctor help and medicines!)

When You see that that the doctor begans to read your papers and ask questions, You can began to hope.

"The gang " from States will mail you DD doctor names, just wait.

I have understod that if this DD is a hell for us girls, it is socially much more worse for men. But You are really needed (if men can get DD it has to be a real thing :wink: )
and there is lot of guys with DD!

It is also typical that all the life turns upside down and everyhting feels horrible, when DD gets really going.
It will get better, You will get your diagnose (and it is important really to be sure that it is DD), You get meds and
papers so people have to belive You.

About the anger: I have a bit of temperament and there someone else gets sad and depressed I get mad :slight_smile:
It is the pain that rewires our brain. You are under tremeudous stress. Take it easy and hold on.

Arieldiva

#7

Arieldiva,
I know your reply was for Ben, but thanks… it has helped me. (having a bad day today)

I’d like to add about the depression/anger thing… I am no expert but I have been told in the past that my depression is due to unexpressed anger. Stuffed anger will manifest itself as depression. You are lucky you get angry!! I am going to try to express my anger more in the future. I have a tough time being assertive, but this whole DD experience has led me to know that if you don’t get angry & stand up for yourself you will get no where.

#8

I was told for years I my lumps where my body’s response to repressed anger. And most people who know me would saythat was nuts, because I don’t hold back my feelings I can rant and rave with the best of them. But I guess thinking back it did take me a while to learn to do that, but still the lumps are DD not unresolved issures.

It amazing what we have to go through to be believed.

Its frustrating to say the least.
Brennie

#9

Doctor Herbst’s contact infomation is on the home page of her website. www.lipomadoc.org
You can email her or call her. She isn’t hard to reach at all/.

Hugs,
Pamela

#10

I was diagnosised by a really good dermatologist, but my nurse practioner who is very open minded and took all the information I gave her and has done some of her own research. We have went through some trials but we have it tolerable right now. I did try Lyrica but that was not a good experience for me, I was a zombie and couldn’t finish a sentence much less go to work.

I saw a neurologist but he was a huge disappointment he just laughed it off and insisted I had fibro and wouldn’t discuss DD. I knew I had fibro and need his help to get a good letter to start my disability. But that was a pointless effort. I haven’t been to another one since. I found the name of a doc in San Antonio who has diagnosised DD. I need a lietter from my doc and we have to wait for her to accept me as a patient for a consultation. What a pain! But I am willing to try if she understands DD.

Brennie

#11

"Now, I’m having another ‘bloom’ and need meds… "

Ben, I like your description! Although I think of bloom as lovely flowers or something, that is exactly how I would describe how my painful knots show up!

#12

Hey all, the first Dr. I saw that said the word “lipoma” was an elderly neurologists that recognized the lumps I had as such. He started me in the direction of DD diagnosiis and the next time I saw my records there it was “Adiposa Delorosa”, at that point my primary Dr. said she would take care of me and she has been wonderful. I get my health care at the VA medical center near me. I was in the service and have a service-connected disability so I get very good care at very low cost…even with no disabillities the VA will take you on if you were in the service at any time…Does anyone live in R.I.? Let me know as I know a Dr. who is an endochinologists who is an angel, he is my outside primary Dr… When I had my lipomas out in my back that also verified my diagnosis and my bloodwork came back lipemic which is blood with fat deposits characteristic of DD. For work possiblilities I know that our local Dept. of Labor has opportunities for the disabled and for those who have limits…otherwise I’m not sure maybe social services. Take care my friends, Bev

#13

WOW Brennie, that is just unbelievable about being told the lumps were repressed anger… that is just so “Out There” to me… Like you could be a magic person who could create lumps on your body…

Like a magician: Look at me! I am angry but holding it in! – watch my arm as I magically create a painful lump right before your eyes! Now I will reveal my leg, watch closely as I create another one!

#14

That is a load of you know what…Heck I have always had a horrid
temper…never holding anything in?? What is that then?? I wonder how some Drs get thru
med school…

#15

I have a bit of a jaded view of some medical doctors, I have seen so many people get railroaded into doing unecessary surgeries, take unecessary meds and go through time and money for so many other reasons other than what they end up with.

Working in a chiro office, we see people who have exhausted every other medical office they could get into and they come in and fine relief and they are always amazed that they spent so much time and money doing other things first. Of course that doesn’t apply to everyone I know. But I have seen some horrific scars on people’s back from those surgeries that would sicken anyone and the stories these people tell are much like some of our own some are insane.

So many docs are pushed to give out so much medicine from the pharmicutical companies Money money money, who care that in three years it will make your liver and kidney’s fail? Does anyone listen to those crazy commercials advertising whatever new meds are out, “this may cause heart attack, stroke or death if so discontinue and call your health care provider?” I wan’t to scream!!!

Ok that’s enough of that rant. I get a little worked up about this. After all the crazy things docs have told me I have a little trouble getting past it.

I tried Lyrica but it made me feel like a zombie and the doc gave Klonopin, that was a real trip. I actually cannot remember all the different meds I have taken over the years. I would have to read all my records in order to list them.

I think the best kind of doctor for any of us, is the one that will hear what we say and help us find what works for each of us.

Love to all,
Brennie

#16

Brennie you are so right. I am sure you have seen a lot in your job. I worked in health insurance and it makes me mad that they blame the insurance companies for the ridiculous medical costs in this country. The insurance companies don’t make more than a reasonable amount for processing the claims. The medical providers get the money! The pharmacutical companies are filthy rich and charge whatever they want. Some of the providers agree to take less and I don’t blame the doctors. Charging a fortune for an MRI or other tests is ridiculous. The employers tell the insurance company what they want to cover. If they want to pay for everything the insurance company will do it! The cost containment measures that were started by the insurance companies about 20 years ago are an attempt to curb the ridiculous inflated medical costs. We need to grow up in this country and realize that people die. The families of the dying person want every extreme measure taken no matter what the cost. Whoops, I went off! Hugs, Grandma Sylvia

#17

RE: We need to grow up in this country and realize that people die

Oh boy, I could go on a good rant on that topic. My father and I have long discussions about this. He gets his care from the VA and if not for that he would be dead. He has luekemia (terminal) and we could never afford his care. I think it is like $8000. a month, but the VA covers it all. MANY times my dad has praised the VA because they have given him a few more years. He gets really mad when he thinks about all the people who are/were in his position without healthcare and they just die. It is disgusting! Oh but the war and bailing out wallstreet results in billions being spent while our citizens die. Some have to choose between food or life saving meds… it is just HORRIBLE!

I have no answers but can rant about it for a long time :slight_smile: Every time my dad calls me I use a bar on my cell phone.

OK I am done now :slight_smile:

#18

Suri, I’m so sorry to hear your dad has leukemia. That is the disease that took my mother. She had insurance, but was 60 when she was diagnosed. I offered my bone marrow for a transplant, but the insurance company wouldn’t pay for it in patients over 59. There were still a lot of medical bills to pay after she passed.

Hugs and spoons,

Pamela

#19

I am so sorry for both of you. My Mom and my husband’s Mom were both put on life support when they were really already gone and kept alive for days. People who can still benefit from medical care should all be able to get it. John’s Mom was 90 and had a massive heart attack at the rehab center the hospital had sent her to. So they did not have her DNR order where she was. It was at the assisted living home where she lived, so they revived her and took her to the hospital and put her on life support. Then it took 4 days for the family to all come and agree to take her off. She died an hour later. My Mom’s death was a real horror story. Her brain cancer was the worst kind and the air they pumped in just came back out of her ruined lungs and her heart could not beat on its own. She was ready to go before they put her on life support and had told me her wishes which my sisters would not honor. She was sedated until they took her back off 10 days later. She died immediately. My sisters are the people I was talking about who should grow up and realize that people do die. Their actions made Mom suffer unnecessarily for ten days. Her poor body blew up like a balloon and the hose ate a big hole in her mouth. You may have different views but my Mom and John’s Mom did not want to be kept alive artificially and had signed papers to that effect that were not activated. Mom’s brother died of leukemia. He was in WWII at age 16…he lied about his age…and on a ship that landed in Japan right after the bombs. It seems that we hear of a lot of leukemia lately. I am glad that you still have your Dad SuRi. and I am sorry for all you have gone through Pam. Hugs, Grandma Sylvia

#20

Oh Sylvia and Pam (and any who have experienced that pain) I have so much empathy having gone through it too. If you haven’t experienced it you really have no idea what that pain feels like. My father is not doing well but insists on living in his own home (he should be in a nursing home, he falls a lot and is so weak) But we try to help him stay in his home by calling and checking every day and then visiting every weekend to keep house and do yard work.

My mom died last year – she had a heart attack due to an idiot doctor who didn’t put her back on her Plavix after knee surgery. (she had stents in arteries near her heart and plavix was her “keep me alive” drug) Oh that is such a long story… what I wanted to pass on is that she did not want to be kept alive artificially either. She had a living will but the doctors just ignored it and kept giving me hope that she would recover. A few of the nurses pulled me aside at times and told me if she did recover she would just be a blob in a nursing home being turned every 4 hours. ANYWAY – My mother did not what that either! (My mom was my best friend and I KNEW what she would want me to do - but it was still the hardest decision I ever made) I had to really get mad to get the doctors to stop the care and be honest with me. They don’t care about the quality of life, just keeping the heart beating is their goal … Long story, but my mother lingered for 2 weeks after I blew up and demanded they honor my mothers wishes. I lived in the hospital. I took breaks to pee & eat & shower - I slept beside her and held her hand for 2 weeks. SO if anyone ever needs a shoulder to cry on – I truly know that pain and can understand. (sometimes just knowing you are not alone with that pain is helpful – Just like DD – This group helps me simply by being here! I am not alone)