We have all been trying, with little success, to find professionals who understand and can help us with our RLS. Pepper163 has recently posted an excellent suggestion (note MGH=Massachusetts General Hospital, one of several Harvard Medical School teaching hospitals):
"IRON INFUSIONS AND GABAPENTIN HAS ELIMINATED MY RLS
Pepper163
1 day ago•6 Replies
I have suffered from RLS for 15 years. I have augmented on ROPINEROLE. I was referred to DR. Winkelstein(correction Dr. Winkelman) at MGH in Boston. He is a Sleep Specialist who specializes in treating RLS
My Ferritin levels were very low. I have received 2 Iron transfusions and started on Gabapentin...I HAVEN'T HAD ANY RLS SINCE THEN. IT HAS SAVED MY LIFE.
Talk to your PCP and have your ferritin levels checked. Discuss having Iron Infusions. Iron supplements may not be enough to get to the Central Nervous system and they cause GI problems. IRON INFUSIONS bypass the GI tract.
I am still on ropinerole. Also, the Gabapentin has to be taken at specific times. Use an alarm on your phone to remember to take them.
It is midnight and I am sitting on my couch with my legs relaxed.....
Talk to your Doctor's about this new treatment.
RLS IS CHRONIC PAIN AND IT SHOULD BE TREATED AS SUCH."
Here are links to Dr. Winkelman and the Sleep Clinic. His CV is staggering, but that is typical of Harvard and most "research scientists". These scientists live for their research and we are not just patients, but part of something much larger and more important:
massgeneral.org/doctors/194...
massgeneral.org/psychiatry/...
I have been to specialists at the various Harvard hospitals and the people I meet there are way beyond impressive. If you are not able to get to Boston, try calling the MGH Sleep Clinic to inquire about someone near you, who understands RLS. Look for "research physicians" affiliated with university/teaching hospitals. It is possible that you could Zoom with the Harvard Sleep Clinic, while having tests/sleep study done locally. I would be there tomorrow, except that my 20-year struggle with RLS ended recently, when I stopped taking Pramipexole. What a fantastic resource Pepper163 has shared with us!!
New to the group
