Seeing a Hemotologist

[jul2873]

About four and a half years ago I saw a neurologist who sent me for iron transfusions. It was almost miraculous: my symptoms, that were really severe, were almost gone. Because the doctor was so far, and also really tried to get me on ropinirole, which he said I needed to take before the iron infusions, I didn't want to go back to him. But I figured I could watch my ferratin and ask for transfusions when it got low.

Well, no. It was down to forty last week. I had an appointment with my primary care doc, and asked if I could get a referral. She told me the problem was that her group (St. Luke's group in Bethlehem, PA) did not want doctors prescribing transfusions unless the ferritin was under 30. But she had an idea (I really like this doc!). She looked for a hematologist who was practicing independently, and found one, a Dr. Salib in Bethlehem. Our insurance is good (TriCare for Life plus Medicare) so I went today.

Wow. He was completely on board that this was too low for RLS. He said our goal should be to get it permanently up above 100. He has a pretty hard accent, but I think what he was suggesting was that he would give me iron transfusions regularly for awhile, and then see how long we could go before it started to slip. He also suggested a sleep study, and apparently I can get the transfusions and do the sleep study right in his building. He was worried about my sleep.

I was almost speechless, as the doctors I had seen previously tried to get me on a D.A. or got mad when I wouldn't take Lyrica, or told me to put soap under my mattress . . . or sheet . . . or something. I had just really decided that I needed to take care of RLS myself, with kratom and vitamins, with occasionally trying to talk a doc into something. And here he was taking over, suggesting what I think is the most current research.

I never thought a hematologist (who really specializes in cancer, as it turns out) would be a great doctor for RLS. It's early days, but it certainly looks good so far!

[Rustsmith]

You were lucky to find a hematologist who is keeping up with the literature. Over the last two or so years, there have been a number of publications (starting I believe with Dr Earley at Hopkins followed by other RLS experts) in hematology journals explaining the importance of iron and ferritin in RLS. These publications addressed the concern of your GP's group that iron infusions are just for anemia.

So, congratulations because you scored big this time!

[jul2873]

Thanks, Steve. You know, I’ve been thinking lately that I really scored big in finding this group years ago, right when my RLS started getting so severe, Because so many people wrote convincingly about the dangers of DAs, I never took more than the smallest amount for a handful of days, just enough so I could tell my doctor I tried them. But I never augmented on them, and I think that may be why my RLS never got as severe as so many cases I’ve read about. Kratom and vitamins and exercise usually control mine pretty well. I really want to send a big thank you to the early people on this board, esp you, Steve, and Anne. You were talking about augmentation before almost any doctors, certainly before any doctors I saw. Even today my primary care doc, who is excellent in so many ways, doesn’t believe in augmentation.

[Polar Bear]

Well done in finding such an understanding and supportive hematologist. Such care is priceless.

[ViewsAskew]

Congrats to you for finding this person. May you have them a LONG time.

I had one that was awesome. He initially tried to send me away and I held my ground and asked him what he knew and if he would read the research I had brought with me. He agreed to review it in the next week or so. When I came back a couple weeks later, he was a changed man - and he admitted he had been wrong. He was a fascinating guy and I loved my appointments with him. He was also 78 years old and ended up retiring a few months after that first meeting and in the middle of us doing the infusions. He left instructions for his replacement to continue them. She refused. I was LIVID - I was at the appointment for the next infusion and they already had the needle in my vein when she called and told them to stop. She wouldn't read the research - I won't ever use that office again. I was crushed.

[Charli4149]

Please would you be able to lead me to the most recents publications on hematology & RLS . Thanks

[jul2873]

I’m sorry Charlie, but this whole thing with Hemotologist’s is new to me. And what I learned is that the medical group can prevent one of their doctors from following a RLS protocol. My primary care doc told me I would have to use a doc outside of the big medical group she was in. And Ann’s story is really frightening. The one I found is an independent doctor who specializes in cancer and practices in the Lehigh Valley in PA. And that’s all I know so far. I’ll post when I learn more.

[ViewsAskew]

Please would you be able to lead me to the most recents publications on hematology & RLS . Thanks

Here are some things you can read and give to your doctor:

https://www.sciencedirect.com/science/a ... 5717315599

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5490383/

https://www.health.harvard.edu/diseases ... tless-legs

[Stainless]

I just can't imagine find something that works so well and having the rug puled out. I've battled this for 67 years now and would trade my first born for a week of relief.

[ViewsAskew]

I just can't imagine find something that works so well and having the rug puled out. I've battled this for 67 years now and would trade my first born for a week of relief.

Right?

[jul2873]

So far, I've had three treatments. I don't know yet how much iron I have after each treatment, as I haven't had a chance to talk with the hemotologist yet. And I have at least one more treatment before I see him.

But today, for the first time, I lay down for a nap (something that used to be impossible for me to do without a large dose of kratom), without taking any kratom and, the real surprise, slept for over an hour with no RLS at all. In fact, I woke up about a half an hour ago and am still sitting on the couch, without any RLS. It's like a miracle. I still have been getting some rls at night, but now I'm curious to see what this night will bring. And I feel so rested now!

[Polar Bear]

Jul2873 what a wonderful result. To feel normal.

[ViewsAskew]

So far, I've had three treatments. I don't know yet how much iron I have after each treatment, as I haven't had a chance to talk with the hemotologist yet. And I have at least one more treatment before I see him.

But today, for the first time, I lay down for a nap (something that used to be impossible for me to do without a large dose of kratom), without taking any kratom and, the real surprise, slept for over an hour with no RLS at all. In fact, I woke up about a half an hour ago and am still sitting on the couch, without any RLS. It's like a miracle. I still have been getting some rls at night, but now I'm curious to see what this night will bring. And I feel so rested now!

That is wonderful!!!

[Stainless]

Only severe RLS sufferers can understand the beautiful feeling of calm legs. I got my first infusion (Injectafer) last week. I've had a real rollercoaster of effects in the first week. 3 days of pain and lack of sleep intermixed with 3 beautiful days of rest. Best of luck to both of us.

[Polar Bear]

Stainless..... Your first sentence says it all. Bliss.