PLEASE tell me what kind of doc specialty might help me? I literally begged for nitroglycerin cream, and was denied. Last night, the throbbing in my skinless fingers woke me up with the throbbing @ 3:26a.m...AGAIN. It's excruciatingly painful much of the time, but worse is the run around I get from doctors.
Basically, I present with white nail beds and incessant peeling from joint crease to under nail beds due to lack of circulation-almost exclusively to Right hand. Started with the thumb only, now it's all right hand fingers + thumb, and now also my left thumb. THEN, they act like I'm causing this. NICE! Though no one will ever admit it, I strongly suspect that Lyme disease did this, and the extensive damage to my spine. One thing at a time though...WHO treats this?? Every dermatologist at UC Davis grand rounds saw the photos of this pealing and healing endless cycle, shrugged their collective shoulders and was tried on systemic IM steroid injections until I had a dangerous side effect. Now my family doc is calling it "eczema" again, and bouncing me BACK to another dermatologist. OH...TWO separate TESTS of mine were positive for anti-scleroderma antibodies.. Any advice?
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TwiceShyNow
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I don't know much about Scleroderma as such TwiceShyNow but if you have Lyme there are meds that can help that I believe....maybe look on web to get a contact for THAT problem? Just a suggestion....its dreadful NOT to be believed. I went to a Rheumatologist with my Raynauds and he laughed at my symptoms!!!! so I know how you feel. Good luck
My heart goes out to you. So sorry to hear this. I, myself have been asking since August 2011, for my feet to be amputated or the nerves severed. My days/nights 24/7 365 days are sheer hell and no one listens. I'm totally housebound.
* 8 months to be referred to a Dermatologist and Pain Clinic.
* The pain clinic cancelled 3 of my appointments so 10 months later saw them
* 43 weeks and still waiting to see a Rheumatologist
* 69 weeks to see Occupational Therapist (GP has asked 4 times since July 2011
* 17 weeks to have my feet x-rayed
So feel I'm fighting a losing battle. Hence I wrote a stinking letter to my GP a week ago demanding to see my medical notes and also discuss amputation or nerves to be cut.
So remember you are not alone in your quest for help/treatment.
HI CardiffLady, I'm sorry to hear about the awful time you're having. And I find it incredible that you're having to wait so long for your appointments!! It's not something that a lot of people like to do, and you may have done this anyway, but phone up the hospital and find out where you are on the waiting list. And keep phoning - as I say, being pushy doesn't sit easy with a lot of people but in the nhs you do find that very often he who shouts loudest, or longest, gets seen soonest! Give them some stick girl!
Holy crap!!! I am SO SORRY! I swear they CAN find out the issue, and get a firm diagnosis. WHY oh why do they NOT???? Someone NEEDS to fix the incentives in medical care. They are all WAY off.
As for Lyme disease, the only really proven treatment is 1-prevention OR LONG term use of antibiotics from an ILADS doctor. (There is plenty of video evidence of this, esp. in "Under Our Skin." There's also GREAT shorter video out there called "7 lyme facts that could have saved me."
More later,
TSN
You should ask for a referral to a rheumatologist, and if you can have a choose and book, book a centre that are scleroderma specialists. If you need a list you need to go via this website sclero.org/forums/index.php?/forum/17-scleroderma-society-uk/
Thank you SOOOO much! I am on my way! At this very moment, I have hydro-colloid dressings on every finger R hand because so much skin is missing, AND they are tingling. Again, I can't thank you enough for taking the time for me. OH wait! LOL I'm in the USA! Still, I will google Scleroderma specialists. Hell, SO many of us are falling apart, there is SURE to be help out here.
There is an American forum to this also, its international
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At this very moment, I have hydro-colloid dressings on every finger R hand because so much skin is missing, AND they are tingling. Again, I can't thank you enough for taking the time for me. OH wait! LOL I'm in the USA! Still, I will google Scleroderma specialists. Hell, SO many of us are falling apart, there is SURE to be help out here.
Nail loss with Raynauds
Another newbie and worried my problems are so much less than others on here!
Unsure of Raynauld's diagnosis , thoughts very much appreciated
Swollen hands - worsening Raynauds or something else?
Raynaulds primary but constantly numb/tingling hands and feet
