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by stjohnh
Wed Apr 24, 2019 12:20 am
Forum: Just Joined?
Topic: I'm new here!
Replies: 6
Views: 67

Re: I'm new here!

Yay! You may get IV iron.
by stjohnh
Sun Apr 21, 2019 6:21 pm
Forum: Just Joined?
Topic: I'm new here!
Replies: 6
Views: 67

Re: I'm new here!

brossman, Welcome !!! Another path you should consider is IV Iron. You are already on oral iron, and it may help, but for most the real benefit is IV iron infusion. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV ...
by stjohnh
Fri Apr 19, 2019 4:30 pm
Forum: General Topics: RLS/WED
Topic: Foundation Webinar on Co-morbid conditions
Replies: 13
Views: 93

Re: Foundation Webinar on Co-morbid conditions

Sounds like you may have a genetic mitochondrial abnormality.
by stjohnh
Fri Apr 19, 2019 2:16 pm
Forum: General Topics: RLS/WED
Topic: Foundation Webinar on Co-morbid conditions
Replies: 13
Views: 93

Re: Foundation Webinar on Co-morbid conditions

Steve, Yes if you are otherwise normal, a ferritin of 650 would be a super-outlier. More likely, your elevated ferritin has another explanation, most likely age+chronic inflammation. Have you had any tests for chronic inflammation? The most common basic tests are ESR and CRP, but there are a variety...
by stjohnh
Fri Apr 19, 2019 1:25 pm
Forum: General Topics: RLS/WED
Topic: Foundation Webinar on Co-morbid conditions
Replies: 13
Views: 93

Re: Foundation Webinar on Co-morbid conditions

Beth, Standard reference ranges in medicine are usually defined as the numbers within two standard devations from the mean. This means that 2.5% of NORMAL people will have result that is higher than the reference range and 2.5% of NORMAL people will have a result that is lower than the reference ran...
by stjohnh
Fri Apr 19, 2019 1:02 pm
Forum: General Topics: RLS/WED
Topic: RLS and CFS/ME
Replies: 5
Views: 79

Re: RLS and CFS/ME

Transferrin is the transport protein for iron, ferritin is the intracellular storage protein (some leaks out of cells into the blood). Transferrin level by itself doesn't mean much, but transferrin saturation (IE the % of transferrin molecules that are actually bound to iron) gives additional inform...
by stjohnh
Tue Apr 16, 2019 7:37 pm
Forum: General Topics: RLS/WED
Topic: Very Tired
Replies: 38
Views: 364

Re: Very Tired

Can you get THC (medical marijuana)? Hemp oil is cbd with some other stuff, but very little THC. Cbd helps lots of people sleep, but doesn't seem to help RLS patients sleep. Seems we need the THC.
by stjohnh
Tue Apr 16, 2019 5:54 pm
Forum: General Topics: RLS/WED
Topic: Very Tired
Replies: 38
Views: 364

Re: Very Tired

Deb, I don't either. But remember, Mirapex operates on the dopamine system, affecting the urge to move symptom. Meds that help with sleep seem to be gabapentin (and Lyrica/Horizant), THC, kratom, dipyridamole, IV iron. Opioids are a mixed bag for sleep. The others I mentioned are either known to aff...
by stjohnh
Mon Apr 15, 2019 9:03 pm
Forum: General Topics: RLS/WED
Topic: Foundation Webinar on Co-morbid conditions
Replies: 13
Views: 93

Re: Foundation Webinar on Co-morbid conditions

The ferritin test is really only helpful if very low (less than 20). In that case there is a fairly good chance that an RLS patient may get some releif by taking oral iron. For those with a ferritin between 20-100, there is some chance that oral iron will help. For those with a ferritin over 100, th...
by stjohnh
Sun Apr 14, 2019 1:34 pm
Forum: Just Joined?
Topic: Hello to all
Replies: 15
Views: 289

Re: Hello to all

.... My personal feeling is that RLS has something to do with the levels of L-dopa in the brain, either too much or not enough, I don't know. Also, when I am lying in bed and the legs are fine and I think to myself, great, the legs are still tonight, then as the thought leaves me, the legs begin. C...
by stjohnh
Fri Apr 12, 2019 8:13 pm
Forum: Prescription Medications
Topic: Anyone NOT experience augmentation on ropinirole?
Replies: 9
Views: 134

Re: Anyone NOT experience augmentation on ropinirole?

Hi SleepyJudy, sounds like you are still sleepy, like many of us. Dopamine agonists like ropinirole are generally thought to eventually cause augmentation in nearly everyone, though may take over 10 years for some. Augmentation is less likely if the dose is kept as low as possible and iron levels ke...
by stjohnh
Fri Apr 12, 2019 2:22 pm
Forum: Just Joined?
Topic: Is this RLS? So confused and need help
Replies: 6
Views: 198

Re: Is this RLS? So confused and need help

Hi JazzyJoan, Welcome to the RLS community, lots of kind, helpful folks here and you will likely gets lots of support, good info, and suggestions. One crucial point about RLS: when you have the leg sensations in the evening, while awake, do they get better immediately by getting up and walking aroun...
by stjohnh
Fri Apr 12, 2019 2:07 pm
Forum: General Topics: RLS/WED
Topic: RLS and CFS/ME
Replies: 5
Views: 79

Re: RLS and CFS/ME

... There is a natural question I haven't touched yet: "WHAT IS IT?" What caused it? As with RLS, there seem to be a lot of possible causes, and many cases where we can't pinpoint one. I'll give you at least some speculation... Time to share something :-) Wow, I think you have given the m...
by stjohnh
Tue Apr 09, 2019 2:33 pm
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 455
Views: 108835

Re: Published Research - General Sleep and RLS (WED)

The editorial (available via a link on the linked page) is written by Ferre and seems to concern the research that was reported in his 2017 paper. badnights, your assumption is correct. The editorial is more understandable than Ferre's original paper, probably because it was written by the journal ...
by stjohnh
Mon Apr 08, 2019 6:06 pm
Forum: Just Joined?
Topic: Hello to all
Replies: 15
Views: 289

Re: Hello to all

Hi Twitch, Welcome to the RLS forum. There is a great deal of experience, knowlege and compassion among the forum members. Someone will have experience with almost anything you can imagine. I am 71, but didn't get RLS until my mid 30's. Looks like you have found out a lot about RLS just from experie...

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