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by ViewsAskew
Wed Sep 12, 2018 3:13 am
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 34
Views: 732

Re: Medication causing Apathy?

One of the questions that I may ask at the conference is why there isn't more research done on the treatment of severe RLS. So much research is done on mild to moderate, drug naive patients. That hits the majority of RLS patients and is great for developing new drugs, but what about those of us who...
by ViewsAskew
Wed Sep 12, 2018 1:19 am
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 49
Views: 1162

Re: SEPTEMBER 2018 - NEW MEMBERS

Tuesday, Sept 11

Welcome to alenrobin, who wants to learn as well as join the discussion.

Start a new topic anytime you are ready, alenrobin. Lots to read and learn.
by ViewsAskew
Tue Sep 11, 2018 10:49 pm
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 34
Views: 732

Re: Medication causing Apathy?

In some ways we already have a long term study in the form of the RLS Opioid Registry that Dr Winkelman is running at Massachusetts General. The idea behind that study is to collect data on opioid use in RLS patients for at least 5 yrs. Hopefully the results will justify continued funding after tha...
by ViewsAskew
Tue Sep 11, 2018 5:41 am
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 422
Views: 98525

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

Rustsmith- I thought of you when I read this. It's not completely new info...and raises so many questions! https://www.neurologyadvisor.com/movement-disorders-advisor/deep-brain-stimulation-restless-leg-syndrome-parkinsons/article/793563/ Restless leg syndrome in individuals with Parkinson disease c...
by ViewsAskew
Tue Sep 11, 2018 5:33 am
Forum: General Topics: RLS/WED
Topic: RLS Foundation hosting a Patient Symposium
Replies: 32
Views: 1382

Re: RLS Foundation hosting a Patient Symposium

@ViewsAskew Do you live in LA now? I hear you about it being hard to plan. @Rustsmith I think I would thoroughly enjoy this meeting. The interactions you describe appeal to me a lot. I have always wished more doctors could know a couple things about my journey, as it could possibly help someone som...
by ViewsAskew
Tue Sep 11, 2018 5:31 am
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 34
Views: 732

Re: Medication causing Apathy?

Fortunately, most people who use methadone are in the lower range - one small study put it around 12-15 mg, if I remember correctly, and most of them had few side effects. But, as is happening with Steve, even those low doses can have side effects. And, it seems that with most pharma options, longev...
by ViewsAskew
Tue Sep 11, 2018 12:51 am
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 484

Re: dipyridamole

curqlink wrote:Tried to talk my Dr into letting me try dipyridamole. He wouldn't even consider it. Just said that was too small of a test to make any conclusions.


Same with my doc.
by ViewsAskew
Mon Sep 10, 2018 5:58 pm
Forum: General Topics: RLS/WED
Topic: Can RLS be muscles actually tensing up?
Replies: 8
Views: 229

Re: Can RLS be muscles actually tensing up?

My doc diagnosed me with fibro two weeks ago but I am not sure that is not accurate. It's more like a body-wide tendonitis along with myofascial trigger points. As you can guess, there is no such problem in the literature! And, she wants me to take an anti-depressant which could make the RLS worse....
by ViewsAskew
Mon Sep 10, 2018 5:27 am
Forum: Prescription Medications
Topic: Is it possible to worsen/get RLS from mirtazipine interdose withdrawal?
Replies: 8
Views: 226

Re: Is it possible to worsen/get RLS from mirtazipine interdose withdrawal?

They always talk about issues with passing the BBB for certain stuff, can't they just like inject something directly? Researchers are working in multiple systems to bypass it. None of these are related to RLS, but when I hear of them, I cannot help but think about how it could affect us! https://ww...
by ViewsAskew
Sun Sep 09, 2018 11:23 pm
Forum: General Topics: RLS/WED
Topic: Can RLS be muscles actually tensing up?
Replies: 8
Views: 229

Re: Can RLS be muscles actually tensing up?

Great, so I have something else doctors can't figure out. My tensing doesn't happen for a split second, it's gradual slow and constant, where I have to focus on the muscle to relax it before the process begins again. I also get tingling too. Sometimes when the tensing is very minimal, there is ting...
by ViewsAskew
Sun Sep 09, 2018 11:11 pm
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 422
Views: 98525

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

Interesting. I don’t get RLS/wed in my legs tho, only my upper left arm. I’m wondering if its the same mechanism. Edit - seems like they addres this. My brother always said he had RLS in his arm (never legs), and as my mom and sister and I had it, he thought that was what it was. About two years ag...
by ViewsAskew
Sun Sep 09, 2018 9:51 pm
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 34
Views: 732

Re: Medication causing Apathy?

Have you all watched the Foundation's webinar on why methadone works better for RLS than other opioids? But, just because it does, doesn't mean that it doesn't come with issues for some of us. And, if it does, it also doesn't mean another opioid will always work (though thankfully it often does). It...
by ViewsAskew
Sun Sep 09, 2018 9:46 pm
Forum: Prescription Medications
Topic: RLS, Depression and Anti-depressants
Replies: 60
Views: 13059

Re: RLS, Depression and Anti-depressants

Ann, So sorry it's taken so long to get back. Been struggling a bit with the password situation. Last month, I finally found a surgeon that I feel comfortable having the surgery with. he wanted me to try the physical therapy and I was surprised that it really helped. Still in a motorized scooter pa...
by ViewsAskew
Sun Sep 09, 2018 9:44 pm
Forum: General Topics: RLS/WED
Topic: How long have you had RLS/WED
Replies: 8
Views: 259

Re: How long have you had RLS/WED

Mine started as a teenager, but didn't get to this level until my late thirties.
by ViewsAskew
Sun Sep 09, 2018 9:44 pm
Forum: Prescription Medications
Topic: Tolerance issues in general
Replies: 12
Views: 317

Re: Tolerance issues in general

Thanks for this discussion. This is especially timely for me since I am starting some sort of medication change (after 2.5 yrs) due to mental health issues brought on by the methadone that I have been taking. I'm not sure where this will take me, but apparently it is once again time for a change. I...

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