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by ViewsAskew
Wed Apr 24, 2019 9:46 pm
Forum: Prescription Medications
Topic: NeuPro: keeping track of patch locations
Replies: 21
Views: 1173

Re: NeuPro: keeping track of patch locations

Ann and Steve, Thank you both for encouraging me to contact a QCC nearest me. I chose Dr. Koo at Yale and spoke with his office who had a record of my call to them last fall but I did not follow through. I may be able to see Dr. Koo in July or August and am on a waiting list for October. I immediat...
by ViewsAskew
Wed Apr 24, 2019 9:42 pm
Forum: Prescription Medications
Topic: Opiate (Methadone) & Sleep Quality
Replies: 8
Views: 137

Re: Opiate (Methadone) & Sleep Quality

How how I wish we didn't have to take these drugs. Ever so often I feel "normal". Luckily we have a very small house. I do very little. I often wonder what would have happened if I had never taken anything...and then I remember sleeping 14 hours a day and being exhausted. I remember the P...
by ViewsAskew
Wed Apr 24, 2019 9:38 pm
Forum: Just Joined?
Topic: I'm new here!
Replies: 6
Views: 65

Re: I'm new here!

Hi brossman - hope you find a Chicago doc. I lived in the city until 2 years ago and never found anyone willing. My GP was originally OK with it, but stopped working with me after a couple years. I tried over 20 docs in a 10 year period. In 2007, I started flying to CA to see Dr. Buchfurhrer. I had ...
by ViewsAskew
Wed Apr 24, 2019 9:32 pm
Forum: Everything Else...just no RLS/WED!
Topic: Very Sad
Replies: 14
Views: 1020

Re: Very Sad

A dog is like family, Deb. Actually it IS family. I lost my German Shepherd mix (with Akita) in 2000 and STILL think of him. I lost my kitty in 1999 and another kitty in 2001. I think of ALL of them still. Husband is highly allergic, so no animals in my near future, but I still dream of being able t...
by ViewsAskew
Sat Apr 20, 2019 1:14 am
Forum: Prescription Medications
Topic: Opiate (Methadone) & Sleep Quality
Replies: 8
Views: 137

Re: Opiate (Methadone) & Sleep Quality

Timing helped me deal with the the alerting, as has changing medications taken, but even then, I often do not feel really refreshed/restored. I never know how much of it is pharmacology, brain chemistry, other issues/conditions, PLMS that may still be happening, etc. I do think - from my experience ...
by ViewsAskew
Wed Apr 17, 2019 5:36 am
Forum: Prescription Medications
Topic: Anyone NOT experience augmentation on ropinirole?
Replies: 9
Views: 133

Re: Anyone NOT experience augmentation on ropinirole?

I did augment after I only took my 2nd pill of Ropinirole. The augmentation I had on it was especially brutal. About augmentation in general: it seems like that the longer people take DAs, the more of them will augment. When I remember the study correctly about 80% of the patients who took DAs had ...
by ViewsAskew
Mon Apr 15, 2019 9:22 pm
Forum: General Topics: RLS/WED
Topic: Very Tired
Replies: 38
Views: 364

Re: Very Tired

debbluebird wrote:I was finally able to sleep this morning, about 8 am to noon.


Small victories...
by ViewsAskew
Mon Apr 15, 2019 9:19 pm
Forum: General Topics: RLS/WED
Topic: Foundation Webinar on Co-morbid conditions
Replies: 13
Views: 92

Re: Foundation Webinar on Co-morbid conditions

Ferritin in the brain is the issue - that is where it is low for us. The only really accurate measure of the ferritin in the brain is to test the cerebrospinal fluid, as I understand it. Very expensive ($3000 to $5000!), painful. Somewhat dangerous. So, the only thing we have is a serum blood test o...
by ViewsAskew
Mon Apr 15, 2019 3:06 am
Forum: Prescription Medications
Topic: NeuPro: keeping track of patch locations
Replies: 21
Views: 1173

Re: NeuPro: keeping track of patch locations

Caitrin, since your neuro seems so dead set against prescribing an opioid, you might want to start thinking about going to one of the Foundation Quality Care Clinics. There are several that are "somewhat" close to you. There is one in Baltimore at Johns Hopkins, one in Connecticut at Yale...
by ViewsAskew
Sun Apr 14, 2019 9:43 pm
Forum: Prescription Medications
Topic: NeuPro: keeping track of patch locations
Replies: 21
Views: 1173

Re: NeuPro: keeping track of patch locations

That just makes me want to cry that your neuro outright refused to prescribe something that would help you. So thankful the Foundation is doing opioid advocacy.
by ViewsAskew
Sun Apr 14, 2019 9:40 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)

Interesting: https://www.psychcongress.com/article/more-genetic-variants-linked-sleep-behavior A few paragraphs from the article: By Will Boggs MD NEW YORK—Nearly four dozen genetic variants appear to be related to sleep quality, quantity, and timing, according to a new genetic study of acceleromete...
by ViewsAskew
Fri Apr 12, 2019 5:30 am
Forum: Just Joined?
Topic: Surviving overnight plane trips
Replies: 12
Views: 312

Re: Surviving overnight plane trips

It's kind of like judging people who use handicap parking when a disability may not be visibly obvious. I am glad you do what you need to do for yourself. Exactly! Not sure about others, but some things have taken me longer to do (to take care of myself) than others. Nice to get there at some point...
by ViewsAskew
Thu Apr 11, 2019 11:12 pm
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: New member - 8 year old son diagnosed at 6 with RLS/PLMD
Replies: 14
Views: 932

Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

Not happy to see all these suffering children, but so happy some of the parents are able to connect and share stories.
by ViewsAskew
Tue Apr 09, 2019 8:55 pm
Forum: General Topics: RLS/WED
Topic: So glad for our advocates
Replies: 5
Views: 77

Re: So glad for our advocates

I loved the lead-in :) I think you're right - it's like meditation, we have to remind ourselves to re-focus. And just like in meditation, we mustn't get upset with ourselves for having to. I like that way of looking at it. It doesn't mean I've failed because I still bemoan my fate - I am succeeding...
by ViewsAskew
Tue Apr 09, 2019 8:52 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Wahls diet for WED? Trying it.
Replies: 73
Views: 19443

Re: Wahls diet for WED? Trying it.

This stuff is so hard sometimes.

:( :( :(

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