CGoldstein or Lady Mary…Would you do me a big favor and contact the doctor in Sweden and ask him to contact Dr. Herbst? If you could also give his contact info to Dr. Herbst maybe they can talk to each other? If you could give the email address and phone numbers to each of them. I have been asking Arieldiva to maybe put them in touch with each other but as she said her doctor was retiring. If he retires maybe at least some doctor in Sweden who knows about DD would work with her. It would be great if they could put their heads together and maybe come up with some new things to try. Bless you and thank you so much. Grandma Sylvia
Dear Sylvia!
I have left the message to the doctor/docent = researcher at but he had retired already, so I do not know if these good doctors have spoken. I know that my doc has traveled round the world and had a lot international contacts. Sadly envy and lack of information mad his carrier impossible. Here we are still lazy,mad, fat ladies for most of the doctors. Two weeks ago when I was suffing for information to find a doctor;I found a reply to somebody with DD. The doctor wrote " DD vannihes when You get older and just take a aspirin the lady who asked was over 70.
I got so mad that I mailed to the doctor and asked him to use the search motor and read!
So my doctors life has not been easy, but he is wonderful! …In his own nerdy way 
I have been his patient over 20years. So I am going to haunt him until he comes to list and says hey, and contacts dr Herbst.
We have to get something international cooking now! Otherwise coming generations of women will also
have the same destiny as we with DD.
I learned that You can take topz and swirl it around cats mouth and then send it to build a register of cats dna and genes. We should do the same thing and get somebody to organize a dna bank. They are okey in a littel plastic tub and in fridge. Somebody must some time get interested in us We beautiful ladies. It would be quite intresting to know where in the genes DD sits…
Hugs
Arieldiva
That is interesting what you said about genes. I have been doing my normal research. I am looking into RECESSIVE genes. In my own experience I am totally recessive. I know there are others that said the same thing. Lipid storage problems are recessive, anxiety is recessive…the list goes on. I am very curious if we put a poll together with different symptoms and also one with different recessive genes if we could corrolate them. Just a thought.
Hi C, ladymary here…the recessive thing…hmmmm. I have lipemic blood, anxiety attacks, fibromyalgia, GERD (acid reflux), chronic fatigue syndrome, restless leg syndrome, degenerative disc disease, arthritis in neck, irritable bowel syndrome, lost my gallbladder in 1989 to disease, have had in the past hyperthyroidism and I’m sure more in common than we can write down so what else would make us recessive…Is lipemic blood in the lipids category, my Dr. said it means fat in the blood…makes sense if we have that particular fat elsewhere…my symptoms are much the same as others, that said the last two flares have brought me down quickly with new pain and more extensive aches that are now daily…neck and shoulder, knees very painful, arms that if used feel like the muscles in upper arms get really hot and hurt (new) sweating tho not as bad with cool weather, shortness of breath, pounding heart with exertion, up and down temps. with exertion and sweating, pain in bed, on couch and in car in my hips, buttocks and lower back…knees included and now my right ankle, difficulty with maintaining weight, tight clothing and large waist, flabby belly, upper arms and inside thigh weight…these are the symptoms I can think of right now that weigh on my mind…and oh yes the itching in lipoma areas and with newly forming ones. What do we all say, do we agree on most of these? Let us hear from you too…take good care my friends, ladymary
I have almost everything you mentioned except for the arthritis in the neck. Notice I get bruises more than i used to and some memory problems. I never know what is old age or if it is DD!
That sounds like me too. I also am talking about the non medical things ie. blonde hair, blue eyes, to be able to curl the tongue, crooked pinky fingers…the list goes on. These are all recessive traits. I am the most recessive in my family and Pamela said that she was the same way. The sweats are a major too, I think that the sweats are from a lipoma pressing on the sympathetic nerve…but that is all MY speculation. Well fortunately G_d gave me the ability to research…so I will keep doing that. Bev, we have got to get together on the phone and talk. I think if we combine our efforts we could really accomplish something.
I think Arieldiva has a good idea. Could you ask Dr. H if she would like to get swabs of our DNA? We could get germ free containers from somewhere and send a cheek swab if Dr. H thinks that could be helpful. Hugs, Grandma Sylvia
Me too. When we studied this in high school, I was the most recessive kid in a very large student population.
Pamela
Dr H has already requested and gotten DNA from a number of us. Some of us had blood drawn and sent to her also.
Hugs,
Pamela
I was called this last week and interviewed by Amanda who is helping Dr. Herbst with research. When she does blood/DNA testing, do you get the findings?
“When she does blood/DNA testing, do you get the findings?”
No, not unless she finds something you need to know about. I’m sure she’d call you if she found something you needed to share with your doctor though.
Hugs,
Pamela
Hey all, C.Goldstein I have all the things you mentioned, blonde, blue eyes, the pinky etc. I wouldn’t mind having my DNA checked also, and yes the memory thing too, my mom was blonde/blue eyed, memory to the extent of losing her ability to express herself…just gobbledgook…I would like to talk to you too C. Are you definitely coming to the golf tourney here in R.I. on Oct. 11? Does anyone else here have a long history of any kind of trauma? The kind of trauma that would be life altering? Just wondering…and no details required as it is a strong question…I’m just entering another flare today, temp. of 99.6, mood change and fatigue to the point of sleeping all afternoon…so that is #3 in the same amt. of weeks. Not a happy camper. Take care all, ladymary
Lady Mary…Do you mean physical trauma or emotional? If you consider being in fear for your life and the life of your mother and siblings for 20 years trauma…I had that. Physical trauma? Do you mean like being physically tortured for years? Just wondering. Hugs, Grandma Sylvia
Hi Grandma Sylvia,
I think what she is referring too is like car accidents, falls, head injuries and things like that. My hands are waving in the air!!! I have had all of the above. I used to fall for no reason when I was taking this migraine medicine. I fell between my mothers and my vehicle one time and bounced my head off of each car. I got a double concussion. I also was in a horrible car accident which pretty much crumpled my spine and put my top vertibrae on my spinal cord. I have been beat and pushed around by my first husband enough to loose 4 babies. Thank g_d I don’t have to go through that anymore.
I also wonder about severe infections like mono, and phneumonia. I know that when I am infected with something I can’t move.
Bev,
I am so sorry that you aren’t feeling well! If you want to chat give me a call.
Hello Grandma and all, yes I meant all traumas, physical, mental, emotional as well as head traumas, accidents and trauma enuf to change lifes’ direction. I was abused in every way by a family member, was thrown from a horse at full speed and trampled, head injuries, I was hit in the head when in the 7th grade by a kid on one of those wood swings as I was walking by, concussion. I had an accident in 1995 that totaled my car, hit broadside by a lady changing the station on her radio…had pelvic injuries and was on crutches 3 months…I had a severe back injury at work and couldn’t work for 3 years, tried to return and never returned again…I would definitely say trauma plays a part in our make-up esp. if it is early and continuous, mine started at 3 yrs. of age and defined who I would become as a person, as a personality and physically what I would be able to cope with. Thanks for your concern and caring, Bev ladymary
Yep, all of the above. Accidents, beatings, mental trauma as a child and as an adult.
Pamela
Bless us all. It seems to me that we are sensitive intelligent women who have been subjected to more than anyone should have to bear and our bodies reacted by sensitizing us to pain. Maybe our bodies are saying “no more”? I see an emotional component to our DD, but it still remains that most people’s bodies do not react by forming painful lumps! My heart reaches out to each of yours with tender caring. This is, after all, Careplace and was established by people who do care about each other. If we had been surrounded by people like ourselves our lives would have taken a different turn. I can’t help but wonder why some of us have to bear so much more than the norm in the form of accidents and things beyond our control causing us anguish. We can’t take anymore! I am hurting so bad today. I went back on my pain meds I just can’t stand it without them so I guess I will just have to swell and nap! We have had to be strong and will continue to be strong. We can’t let the “bad” people win by giving up. We have to put on our big girl panties and deal with it! But boy oh boy that is easier to say than to do! Life is certainly a challenge even without the attack of the aliens! If I could I would take all of your pain away and erase the bad memories. When I start to dwell on them, I stop myself and change the thoughts to ones of happy things. I read what each of you wrote with care and my heart aches for you. Sending you warm hugs…Grandma Sylvia