Need Support

[badnights]

Oh the doc you mentioned? is he okay? I was confused bout what you stated.

No wonder, I wasn't clear at all. He didn't know anything more than how to diagnose it at first, but he learned fast. He kind of got everything thrown at him in Yellowknife because we lack specialists like neurologists.

I thought maybe he would have run into more WED patients, and continued to learn how to treat it, but I should have looked him up before I said that. Apparently he has returned to his original specialty of gastroenterology, and he's on Saltspring Island. He probably doesn't deal with WED at all anymore.

[oceanwalker]

oh Thank you Beth!!

I wish that doc all the best.

Thanks so much for all of your information.

Sincerely,
OceanWalker

[oceanwalker]

I am still very happy to say that without this wonderful group and the amazing people in it; I would NOT be as educated as I am (much room to grow lol) with WED.

I wish to thank you all for helping me to date.
So far it's okay..and I hope and Pray it stays this way.

Sincerely,
OceanWalker

[Polar Bear]

it's so good to hear that all is still good.
And yes, education and information is the way to go.

[oceanwalker]

Hello Polar Bear, Beth, Ann and everyone.
Happy to say ..to date all's still ok.
Sleeping's not much. Only bout hmm 2.5 to 3 hours in a row but I wouldn't change it for the world.
I will keep you all posted.

I do nap in the day.

Keep well ...Oceanwalker... Praying one day at a time..... for this lovely free time. and if it ends....that's okay too.

[ViewsAskew]

Glad to hear you are napping. Hope you get more than 3 hours total. It's hard to keep that up.

[Polar Bear]

Oceanwalker - great to hear from you

[badnights]

Happy news to give us hope

[oceanwalker]

Just wishing to say Hello..it's been a while and still I seem to be okay. However; I did have some sensations past month..but the same amount of mirapex seems to still be working. Anyways I sure Hope and Pray so!

Praying that everyone's okay.

Sincerely ..Oceanwalker

[oceanwalker]

Ahh ONE thing an important thing is .... that I don't and haven't been able to sleep more than 3 or so hours. There were some days I slept to 5am wow!!!! but it's all good and super as long as the mirapex is working along with the gabapentin, rivotril aka clonazepam and emtec aka ty#3 at night. I don't give a hoot about no sleep (can catch20 min. here and there) as long as the WED doesn't return.

sincerely,
Praying to keep this smile for now ..one day at a time.

[oceanwalker]

Hi ..well I am back to let you all know..it's been a very long time BUT WED/RLS is back!
Not yet with that vengeance;but it's starting bout 2pm every day ..

by the time I take my pramipexole (mirapex) one and one half of a .25 tablet/ @6pm I have had sensations for 4 hours.

Now I am not complaining at all.

Still I am sorta ok for sleeping (about 3 hours/night) Plus naps during day.

It reared it's ugly head as I knew it would.

well this is just a wee note from me to you.

Nothing much exciting yet. Praying it will just stay as is.

Thanks again and Praying everyone here's better. Or at least doing better.

Sincerely Ocean

[ViewsAskew]

So sorry it's back.

[oceanwalker]

Hello Ann and TY ..
Well tis life I suppose. It's back and I am in midst of some research.

If anyone sees this post and has seen or heard of a Dr. Lawrence Pawluk in Alberta BC Canada Please let me know.

It's our Canadian ThanksGiving today so I won't be able to access anybody/thing on the net/phone.

thanks to all for always being here for me and everyone;) with always some type of answer or pertinent info.

You know ..I give up on the ferritin etc. (I won't give up just kidding) There has to be a doctor somewhere here (we have tons of them including several specialists/not WED specialists) who could give me proper test&who understand something about WED/RLS

I forgot what numbers my ferritin is but totally below what it's to be. It had never been checked since. I took iron for a few months and that's that.

Now I have to re start my research and fight from the beginning again. Ahh well it's worth it for a better Q of life.

Sincerely,
Ocean

[ViewsAskew]

Hello Ann and TY ..
Well tis life I suppose. It's back and I am in midst of some research.

If anyone sees this post and has seen or heard of a Dr. Lawrence Pawluk in Alberta BC Canada Please let me know.

It's our Canadian ThanksGiving today so I won't be able to access anybody/thing on the net/phone.

thanks to all for always being here for me and everyone;) with always some type of answer or pertinent info.

You know ..I give up on the ferritin etc. (I won't give up just kidding) There has to be a doctor somewhere here (we have tons of them including several specialists/not WED specialists) who could give me proper test&who understand something about WED/RLS

I forgot what numbers my ferritin is but totally below what it's to be. It had never been checked since. I took iron for a few months and that's that.

Now I have to re start my research and fight from the beginning again. Ahh well it's worth it for a better Q of life.

Sincerely,
Ocean

Ocean, I'm pretty sure that is Beth's doctor. She is one of our moderators, but is taking a leave of absence from the board for awhile. If you PM her, she likely would get it, though.

[oceanwalker]

Oh thank you so very much Ann:) I will PM her and again..many thanks.

I also know I am augmenting.

Even though no WED/RLS I still took my daily Rx of pramipexole ; so hmm

Anyways again many thanks Ann and Hope and Pray you're doing fine.