Search found 194 matches

by Joanie60
Mon Sep 19, 2016 11:07 pm
Forum: Prescription Medications
Topic: Lost
Replies: 27
Views: 2309

Re: Lost

Richviv, I absolutely concur with all your sentiments!! This disease is a HUGE pain in the butt (and legs and arms and trunk and face) and it is scary to move from something that works to something that may or may not. I usually find, as they say, pain is a great motivator. If you are not in screami...
by Joanie60
Mon Sep 19, 2016 10:47 pm
Forum: Physical Treatments
Topic: Compression tights
Replies: 14
Views: 3888

Compression tights

Hey guys! I usually post in the prescription forum because I have NEVER found anything besides meds which work for me. Until this week! My son gets "tingly feet". I am hoping against hope he has not inherited my RLS. Anyway, he told me he wears compression socks to bed when his feet act up...
by Joanie60
Thu May 12, 2016 8:35 pm
Forum: General Topics: RLS/WED
Topic: NIH Request for Research Topics by May 16
Replies: 18
Views: 1069

Re: NIH Request for Research Topics by May 16

Hey hey hey! Let's hear it for individuals making a difference! This damn syndrome can make me feel so powerless but your post just brightened my day Steve!! We DO have power, especially when we work together 8) 8)
by Joanie60
Sun May 08, 2016 4:00 pm
Forum: General Topics: RLS/WED
Topic: NIH Request for Research Topics by May 16
Replies: 18
Views: 1069

Re: NIH Request for Research Topics by May 16

Sent it to rfi-sleepplan about three hours ago. Will forward to TweryM.

Thanks Steve! Hope everyone will weigh in, requesting more clinical trials (esp for opiates!! Well, at least in my opinion!!) and further genetic research. I hardly dare for a "cure" but the hope keeps me going.

Joanie
by Joanie60
Sun May 08, 2016 12:52 pm
Forum: General Topics: RLS/WED
Topic: NIH Request for Research Topics by May 16
Replies: 18
Views: 1069

Re: NIH Request for Research Topics by May 16

I sent mine to: NCSDR-RFI2016@spmail.nih.gov per Facebook. Have not gotten it bounced back. Should I forward to Karla to make sure it gets to the right place?? And yes Steve, before I even read your post, I put in a plug for opiate studies!! Also genetic research (long term) because I can't help but...
by Joanie60
Thu Apr 28, 2016 1:38 pm
Forum: Prescription Medications
Topic: Whew!! Prescription refilled
Replies: 14
Views: 1240

Re: Whew!! Prescription refilled

I think Holland also nailed it with "This is where caring, competent MDs with enough time to do their job makes a big difference.". My primary left her original practice because her boss/partner required her to see 8 patients an hour. Really??? Now, she works 3 1/2 day a week but leaves he...
by Joanie60
Wed Apr 27, 2016 1:27 pm
Forum: Prescription Medications
Topic: Whew!! Prescription refilled
Replies: 14
Views: 1240

Re: Whew!! Prescription refilled

That is an interesting perspective, and I guess the idea behind having a "primary" doc. I know, many years ago when my primary diagnosed me with RLS she said the only med she felt comfortable prescribing was Ambien or something like that. She said she would/could not prescribe the Ropinero...
by Joanie60
Wed Apr 27, 2016 6:04 am
Forum: Prescription Medications
Topic: Whew!! Prescription refilled
Replies: 14
Views: 1240

Re: Whew!! Prescription refilled

Wow. A neuro who won't prescribe them but a primary who will (thank heavens for a terrific primary you have)!! Perhaps a touch of insight...my neuro said they are battling an image issue, believe it or not. She said they are being "talked about" (by other docs I surmised from the context) ...
by Joanie60
Sun Apr 24, 2016 12:24 pm
Forum: Prescription Medications
Topic: 4 mg. Ropinerole Extended Release
Replies: 20
Views: 1226

Re: 4 mg. Ropinerole Extended Release

I am sorry you didn't have a chance to talk about opiates. I pay for my methadone "out of pocket" and it ranges from $20-$32 per month for 60 tablets of 10mg. (I take 1 1/2 tablets per day and save the rest). Ironic that the best medicine for me is also, by far, the cheapest.
by Joanie60
Sun Apr 24, 2016 12:59 am
Forum: Prescription Medications
Topic: Whew!! Prescription refilled
Replies: 14
Views: 1240

Re: Whew!! Prescription refilled

My script says 1 1/2 pills (10 mg each) per day. That's 45 (10mg) pills per month. My doc writes "dispense 60 pills" each and every time~ I have no idea why. Sometimes my insurance will pay for 45, sometimes 51, and I finally discovered if I pay out of pocket, I can get all 60 of them. Out...
by Joanie60
Sun Apr 24, 2016 12:18 am
Forum: Prescription Medications
Topic: Am I experiencing a Miracle??
Replies: 13
Views: 960

Re: Am I experiencing a Miracle??

GymChamp,

I am SO HAPPY for you!!! How wonderful that your son is involved and helpful, and that your doc will prescribe what you need. What an incredible blessing...to have your life back :-)

Fingers crossed that this combination works FOREVER!!

Joanie
by Joanie60
Sun Apr 24, 2016 12:05 am
Forum: Prescription Medications
Topic: Whew!! Prescription refilled
Replies: 14
Views: 1240

Whew!! Prescription refilled

Happy Weekend everyone! I think I posted my "freak out" of last month when my doc sent an email message saying: I know methadone has been working well for you for the last year, but we need to switch over to an FDA-approved med. So how about you start on Lyrica (which in the past gave me c...
by Joanie60
Thu Mar 31, 2016 12:31 pm
Forum: Prescription Medications
Topic: Depression....again
Replies: 58
Views: 3031

Re: Depression....again

Sure does sound like side effects to me :-( And yucky ones at that! I am too quick to stop meds because of yucky side effects but when I fight it out, seems to take a month for them to subside. Congrats on your carrot/celery binging. Even if junk food gets in there, you are minimizing it with veggie...
by Joanie60
Wed Mar 23, 2016 11:34 pm
Forum: Prescription Medications
Topic: Depression....again
Replies: 58
Views: 3031

Re: Depression....again

Made me laugh too!! Not sure if would have made me laugh if the big black dog was barking at my door (depression) but one thing I love about this forum...I KNOW, with every living cell in my body, even the ones who are going haywire right now, jumping and twitching, that you guys have my back. You k...
by Joanie60
Wed Mar 23, 2016 2:15 am
Forum: Prescription Medications
Topic: Depression....again
Replies: 58
Views: 3031

Re: Depression....again

Sounds to me like you WORKED today!! More than that, you gave HOPE to someone!! Good heavens Ann! Take a bow, you've done a great job today :-)

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