Lots of physicians on DDSG learning from our seasoned docs and from our members! Pretty awesome!
Thank you for sharing. I have Hashimottos and several other memners have it or other thyroid conditions. As you read through the information ofnyou have questions don't hesitate to post them. Before your next visit make sure to print out the questions to ask your Doc. They are links in the flipbook.
I have hashi too
Welcome this is a great place to meet good people and get great support and learn more about this disease
Xxxxxxx Yzzzzzz in answer to your question about whether or not you might be proceeding too quickly with the RT given you were only diagnosed a week ago. As you correctly guessed, there is no test, like a blood biomarker ....yet, to determine who will have a more aggressive course of the disease. If you have diathesis - presence of the disease in both hands, and a foot or two feet and one hand (in other words - more than one area), if you have early age of onset - around 50 or younger and you have family members with the disease (however it can skip generations), then you may have a more aggressive course of the disease. You can absolutely watch and wait. Our friend Denise Gardner Brown has decided to watch and wait. One thing to think about is if you have rapidly developing cords and nodules and have itching and pain, you have active disease. This is the time when the disease is most sensitive to RT and has the best chance of working to halt progression. What happens if you wait? If you have contracture, you can get that corrected and then have RT. If you wait and your fibromas in your foot get bigger they may or may not diminish in size. Remember, the goal of RT is to halt progression. Any regression of disease is jsut a bonus and is not uniformly the experience of all patients who have RT. It's one of those decisions in life where there are no clear answers.
Thank you Lesley, I will see what the scans show, see if it's in my feet, read more & learn more & hopefully the right decision will come to me
Xxxxxxx Yzzzzzz, I spent 5 months of solid research - night and day - before I made my treatment decision. One day at a time. This is a complex disease and there are no clear answers. Each person's treatment decision will be based on a wide range of factors that are unique to them.
I have had one of my fingers stick a few times but not my whole hand
No idea. But my hand is Very upset with me. Leslie Wieslander Rosenthal I'm considering it again. I've been thinking the same thing. :(
I got the VOLATRAN GEL from Dr. P today. i put it on about 30 mins ago and it made my hand tingly feeling. very unusual . But now it seems to be actually helping. Im going to possibly take y'all advice and do RT again
Xxxxxxx Yzzzzzz experience with Xiaflex is good. I truly think it depends on the experience of the doc doing the procedure. Find one that has done 100s. For me I would opt for NA with Pess or Denkler.
Xxxxxxx Yzzzzzz I would ask how many NA or Xiaflex treatments he has done.
here's some Doctors in MN; Surgeon NA-X Nicholas J. Meyer, MD www.stcroixortho.com St. Croix Orthopaedics (651) 351-2639 US Minnesota Stillwater 1701 Curve Crest Blvd., Suite 104 55082
RO Dr. Kathryn E. Dusenbery Univ. of Minnesota Med. Center 612-273-6700 US Minnesota Minneapolis 500 Havard St., 1-140 55455
RO Dr. Kenneth Dornfeld http://www.essentiahealth.org/Main/physician-locat or/Dornfeld-Kenneth-MD-PhD-300.aspx Essentia Health Cancer Center 218-786-3625 US Minnesota Duluth 420 E. First St. 55805
Surgeon NA-X Dr. Marco Rizzo, Associate Professor Department of Orthopedic Surgery, Mayo Clinic (507) 284-3689 US Minnesota Rochester 200 First St. SW 55905
Surgeon Amy Moeller, MD https://www.fairview.org/Providers/Bio/S_103638 Maple Grove Hospital US MN MAPLE GROVE 9875 HOSPITAL DRIVE 55369
I see a Chiropractor weekly. Sometimes it provides a little relief. Since they adjust your entire body, you might have luck if you're possibly misaligned.... I tend to walk funny to compensate for my right knee, which in turn causes pain in my hips, the chiro has helped with that.
Thank you! I'm thankful I have aspergers with delayed pain sensory. The stuff I read on this forum sounds terrible.