RLS CENTER

[RC723]

hello,

I was curious if anyone here is in the states and have visited the rls center in Pittsburgh and if so, what was your experience

thanks,

[DicCarlson]

it is not listed on rls.org...

rls.org/treatment/quality-c...

[Seaux in reply to DicCarlson]

I don't know of one in Pittsburgh. Go to google, then enter "RLS Quality Care Centers" and there will be a list of them.

[ChrisColumbus in reply to DicCarlson]

Number 12 on the rls.org list - University of Pittsburgh Medical Centre

[Reb0013 in reply to ChrisColumbus]

Hi Chris, did you ever establish if there is a RLS center in Pittsburgh? I live in Florida and will just about go anywhere for some relief

[ChrisColumbus in reply to Reb0013]

This is the full list, with full details linked at the bottom of the list. (Which are currently taking on patients? You'll need to contact them directly)

1. Johns Hopkins, Baltimore, MD

2. Houston Methodist Neurological Institute, Houston, TX

3. Mayo Clinic, Rochester, MN

4. Innsbruck Medical University, Austria.

5. Scanford, Palo Alto, CA

6. Emory, Atlanta, GA

7. Yale, New Haven, CT

8. Vanderbilt, Nashville, TN

9. Scripps, San Diego, CA

10. Neurocenter of Southern Switzerland. Switzerland

11. Massachusetts General, Boston, MA

12. University of Pittsburgh Medical Center Pittsburgh, PA

rls.org/treatment/quality-c...

[Reb0013 in reply to ChrisColumbus]

Yes, I did find the list and thank you for sending it!

[Eryl]

To my knowlege this is the only solution that makes sense, though I have found a solution employing diet and individual vitamins and minerals. seratame.com/seratame/

[Boldgirl45 in reply to Eryl]

I know you do loads re: diet Eryl, but do you also use this particular product? I've seen someone else mention on here...but they just took the advice and didn't use the product itself.

[Eryl in reply to Boldgirl45]

No I didn't use their product which is just a mix of readily available vitamins and minerals. The important thing is the diet, avoiding inflammatory foods and cooking oils.

[Boldgirl45 in reply to Eryl]

Thanks Eryl!

[RC723 in reply to Eryl]

Eryl my rls is out of control.. I’ve suffered from chronic headaches for years and now chronic severe rls in my legs and also arms at times. Opiates don’t even give enough relief. I’m going to try a real diet… I know for most people it won’t work but my parents think I should try to see if I get any relief. My question is did U ever take meds or opiates before the diet worked for u ? Did any meds work for u?

[Eryl in reply to RC723]

No, I took the diet route before reaching for meds.

[RC723 in reply to Eryl]

Are u able to send me any info on what u took ?

[enjoy2013 in reply to RC723]

Did you try iron?

[RC723 in reply to enjoy2013]

yeah I’ve done it all even opiates don’t do much it’s so weird. I just turned 35 I have it chronic 24-7 legs and arms mostly too. I get more electric shocks than restlessness but it’s terrible. My doc said we can try disability but even if I got disability I’m still suffering with no life quality. I feel like my doctor should be trying everything possible but doctors only care so much. I sometimes think I have something else going on but nobody can figure it out. I also had chronic headaches for years my parents think my shitty eating habits are a small part of the problem but I don’t know anymore I wish iron supplements were all we needed lol. What do u take ?

[enjoy2013 in reply to RC723]

IN NOV 2022 a research was published suggesting nicotinamide riboside could favor neoplasia and metastases.

A bioluminescent-based probe for in vivo non-invasive monitoring of nicotinamide riboside uptake reveals a link between metastasis and NAD+ metabolism": sciencedirect.com/science/a...

I read on Facebook, and this is a person with parkinson's disease, she had severe RLS, and she is taking Truniagen 900 mg and it cut tge RLS off. Truniagen is mostly nicotinamide riboside. I just ordered some with iHerb. Although since i got the iv iron, I am much better.

Now my problem is falling asleep at a decent schedule.

[RC723 in reply to enjoy2013]

what was your ferritin when you got the infusion ?

[enjoy2013 in reply to RC723]

it was 75 when it was prescribed, but as I had to wait about 2 weeks and I couldn’t take another sleepless night, I started oral supplementation and on the control blood test it was 92.

[RC723 in reply to enjoy2013]

did they show you what it was after the infusion ? I’m just curious? You answered me very quickly by the way lol

[enjoy2013 in reply to RC723]

what do you mean, what would they show me? The label?

[RC723 in reply to enjoy2013]

Did they show you your ferritin level after the infusion ?

[enjoy2013 in reply to RC723]

oh, no. We said I should make a new blood test within 2 weeks after the iv treatment

[TeddiJ in reply to enjoy2013]

Hi. I was looking at that, too, and then read these awful reports about how it has a high incidence of cancer. Not sure if it is true or not?!

[enjoy2013 in reply to TeddiJ]

Thanks, I edited my post to add this information

[Sleepylamb in reply to RC723]

Just happened to see your reply and wondered if you have ever been tested for wheat allergies. You could be gluten intolerant? It can cause RLS along with headaches and many other problems.

[DataRN]

I have never been treated at the RLS QOC Center at UPMC but I am a patient at the QOC Center at Mass General in Boston. I was on a waiting list for years before I got in but it was well worth it.

RLS Foundation List of QOC Centers

[enjoy2013 in reply to DataRN]

What treatment did they give you?

[SueJohnson]

All of the RLS Quality Care Centers are excellent. You can't go wrong by going there.