Why wear a ribbon?

"My boyfriend" (denverwind)

MDJunction to me

"MDJ is like a family to me where I can talk to others who understand how I feel. I can as group leader help others and support them and be there
for each other for the good and bad times. MDJ has helped me come to terms with my disability and be able to live my life and be positive. I just hope that I can be there for others like my friends on MDJ have been here for me." (jackie1979)

more testimonials

My Lady Lumps

Today is 03/31/2011 and I finally registered to get to know others who are like me with this Dercums Disease. I realized this is much bigger than what I had anticipated, and that I am out of my league in wrapping my head around this disease and need support. I finally was diagnosed by Dr. Herbst (by the way she is amazing!) recently in early December 2010 and I actually have another appointment next week in 04/05/11 (cannot wait to see Dr. Herbst again!). I give all my thanks and love to my Auntie Midge who reconnected with me a few years ago when my sister was dying with liver cancer and my mother at the same time was diagnosed with breast cancer (rough times). My Auntie Midge was the one who opened my eyes to what was possibly going on with my body, etc. (she has this too, but has not been officially diagnosed but has an appointment with Dr. Herbst in August of this year), and suggested that I make an appointment with Dr. Herbst. Bottom line, Dr. Herbst diagnosed me with Type III DD and my body is covered from partically head to toe with my "lady lumps" (that is what I named my DD disease) barely have one inch or space in my body that is not sportin a lump (have some few on face, but not as horribly bad as the rest of my body). Also, I am "thin" which to my understanding with DD is "rarely" seen in thin people. The excruciating pain I live with and brain fog is killin me over here. I went from a vibrant, extremely active, and sharp quick-minded person, to someone who I don't know anymore and have to re-think and re-do my whole life on a day to day basis. I actually feel very teary writing this down for the first time. Wow...I am at a lost for words. ...Read More

Finally response and results

Jul 05 2011

I prayed to GOD this morning to please help me so I can finally get a response and help from phone call messages to Dr. Herbst and UCSD Medical that I have been dealing with for about a month. My prayers were answered today and I am so grateful to GOD.

Finally a lovely and caring managing nurse at UCSD Medical was able to get Dr. Herbst to call her back today and write up a new prescription for my pain meds and also she said Dr. Herbst wants to move up my appointment from September to early August. We get to discuss other options for pain management, DD is getting much worse and also my blood work results from Florida...yippie! Also my appointment is the same day as my Auntie's appointment with her. My Auntie has her very first visit to get officially diagnosed with DD. She is flying in from AZ and I cannot wait to see her and the both of us attend our appointments together. I truly believe that everything happens for a reason and that we were meant to be at the same appointment together. I will know what that answer is when that day comes with GOD's enlightenment.

Poor Dr. Herbst, I cannot imagine how busy she is and I try so hard not to bother her and I feel so guilty at times when I do call her for help and assistance, since I am one of many many DD patients that she oversees and takes care of. I am thinking about sharing my medical records from her diagnosis of my DD to my regular PCP, to lighten up her load. So they can handle stuff like refills for my pain meds and other miscellaneous situations until my next follow up visit with Dr. Herbst which is normally every 4 months.

Today is a good day with HUGE stress relief. All my thanks, appreication and love to my Father/GOD.

Previous diary posts by myladylumps:

More bad days then good :O(
2nd time blood work was much smoother!
ARGHH!!! have to re-take the blood samples again

Dercum's Disease update
2nd follow up visit with Dr. Herbst

Comments (6) Add Comment

written by hopefullee, July 06, 2011

I am so glad that you are having a great day ... I hope that your visit to see Dr H brings you more answers and that you continue to have more wonderful days...

God is here with us in this DD holding our hands...

Lee

written by myladylumps, July 06, 2011

Good morning Lee...

Thank you very much for your kind words and support. Really means a lot to me.

GOD is really holding our hands through this all. We surely cannot do this without him.

Thanks again, take care, be well and have a very BLESSED DAY

written by MelosGirl, July 16, 2011

Hi Lady, I hope you are doing well. So far, I'm trying to do this without pain meds, but I don't think I can much longer. This site is great, I don't feel so alone anymore. People here actually understand the pain of DD! The doctors certainly have no clue about this. I went to a "top" doc last week, he teaches @ UM, he told me to go to the Mayo Clinic. I wonder if anyone here has tried that route. Well, I agree with you that we are all in Gods hands and I pray that he can help to obliterate this from our bodies. I will never give up hope that we will find a cure.

written by myladylumps, July 18, 2011

Hi MelosGirl...

I hope your doing well too. I just took my pain med and have my heating blanket around me, which is quite a normal daily routine with DD. I totally understand trying to manage your pain with DD "without" pain meds and I commend you on at least trying. I tried as well to do the same and but the pain is too great and having any sort of daily normalcy was fading very fast. The pain meds do help me function physically in getting through the day.

I really enjoy this site as well. Everyone is so wonderful, kind, supportive and there is extensive knowledge through their experiences with living with DD.

My Auntie actually went to the Mayo Clinic many many years ago trying to find answers about all her symptoms before she found out she had DD. She honestly did not have a good experience with them at all, in fact it was diheartening and depressing. Now though, she believes they are finally on board in recognizing DD, so hopefully your experience could be completely different and be a positive one.

Putting it all in GOD's hands is the BEST place to be and I agree that we should never give up hope that a cure will be found to help us all.

Please keep me posted on your appointment with the Mayo Clinic. I truly hope you find answers and that it all works out for you.

Take care and be well MelosGirl

smilies/grin.gif

written by lynnelee, February 07, 2012

My hope is Dr H. giving me the official diagnosis then documentation so that my pain management md will be able to better manage my care. I can then rely on Dr. H solely for advice and advances in research...but not as a primary or even specialist md. My current pain doctor has me on 75mcg fentanyl patch with up to 4 hydrocodone...I have several pain conditions and he says this is all he will order. However with DD DX I know that they will be more willing to increase or eventually switch to methadone or something strong,like that. Severe intractable pain is incompatible with life.

written by myladylumps, February 12, 2012

Hi Lynnelee...

So lovely to hear from you.

Dr. Herbst diagnosed me with Type III DD. She had me do quite a lot, I mean a lot of blood work tests that some labs have not even heard of. One was a snap shot of my immune system which showed that the function of my immune system was very abnormally low. The normal function is 12-14 and my blood work results showed that my reflected 5.7, the lowest that Dr. Herbst said she has seen was 5.3, so I was the 2nd lowest she has ever seen. Also my last follow up visit which was back in November Dr. Herbst said that the lipomas are basically taking over my body because my inflammation blood work results showed that my inflammation ratio is 35 to 1 and the normal ratio should be 1 to 1. She talked about doing Chemo but then remembered that my immune system is already compromised and is too low to handle Chemo and my t-cells function were reflecting that they were extremely abnormal as well showing they are they are highly overcompensating. I have hundreds of lipomas all over my body from head to toe.

So Dr. Herbst referred me to a pain management specialist doctor who after reviewing my medical records from Dr. Herbst said the best pain medication for me to be on would be Methadone or Morphine, combo with Oxycodone. I turned down both the Methadone and Morphine. We compromised and came to an agreement that I would try for now taking a combo of Oxycotin combo with Oxycodone. Fist thing in the morning when I wake up, I immediately take the Oxycodone because it is fast acting but because it is such a short duration pain med, I would take the Oxycotin an hour later. Then in between the next 12-hours I can take 1-2 Oxycodone and then on the 12th hour, I would take another Oxycontin. NOW also, Dr. Herbst referred me to a Neurologist Specialist because I was having involuntary body jerks/spasms and seizures, I take as well in between those 12-hours a half pill of Clonazepan 1-2 times and then right before bed I take a full pill of the Clonazepan. So far all these new meds at this routine is working good for me and I pray that it will continue to do so. The reason I turned down the Methadone and Morphine is because Methadone causes irregular heart beat and I have a heart disorder which is a mitro valve prolapse and I also own and run a very busy business can I absolutely could not function on Morphine.

So I totally understand and sympathize with your pain and how unbearable life can be at that level of pain. When will your appointment be with Dr. Herbst?

My best wishes and prayers to you. You take care sunshine and please keep me posted.