Need Support

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

I don't know how much to thank you all for this information.
The WED's are getting really bad again.
I understand what you are saying about the cocktail/combo of meds Polar Bear. I too am taking rivotril,codeine (small amounts) and dilaudid in the evening along with a low dosage of mirapex. Perhaps the mirapex needs to be upped? Then I wonder? Am I augmenting? I don't know.
Thank you Ann for all the information re; the area,address,etc.
All this information from both of you is very very much appreciated.
I am in tears again. Tomorrow I see my doc and gonna tell him about my plans....and request a recq. for the ferritin glucose.
There's lots I need to do like get my passport etc.
Find flights etc.
Praying this all works out okay.
Thank you so so much!!!!
Sincerely Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Forgot to state that there's a neurologist I saw many many years ago. A Dr G. Robinson. A no nonscence doctor who many years ago suggested I use a high amount of codeine at night prior to bed.
This worked for me for a while. He was the only doctor who seemed sincere and who actually had knowledge of WED/RLS at that time. Went through many specialists who refused to prescribe anything and had no help available to me.
I will give him a call tomorrow am to see if there's a possibility to see him. He is in Vancouver BC not so so far.
It's all worth a try. If I can get a referral.?
Will keep you all posted.

Polar Bear
Moderator
Posts: 8009
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

If the neurologist in Vancouver was willing to work with you, wouldn't it be wonderful, and you already know him.
Would he be amenable to using the Foundation information leaflets on treatment.
Even scan them and forward them to him via email - with appropriate sections highlighted, and ask that he read the information prior to any appointment.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi all and sorry I didn't post sooner..been under the weather.
Well the Vancouver based neurologist only specializes in headaches now..np.
But my doctor's totally amazing now and is working with me.
I take one and a quarter of mirapex coupled with the dilaudid at night and it's working. I do have some *stuff* going on just befor e the meds..but I am able to sleep and that's wonderful.
My doc's giving me the ferritin test so I am happy!! He's been totally awesome.
Still Praying this all will work.
I wish to thank you all for the input and information.
For today ..things are working out. I see my doc again tomorrow and am unsure of the ferritin glucose test??? is it just the iron test?? or a special test??
Thank You so so much !!!!

Sincerely,
Oceanwalker

Rustsmith
Moderator
Posts: 5142
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Need Support

Post by Rustsmith »

The ferritin test is simply one more analysis the lab performs as part of the your blood tests. The ferritin analysis is not normally done when your doctor orders a standard blood test, such as a CBC, where they are looking for anemia. However, as far as you are concerned, the ferritin test might be one more small vial that is drawn along with those for the CBC and is simply one more analysis that gets paid for by your insurance (or you).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

ocean - remember to get the actual number for the ferritin result. It is not good enough for the lab or doctor to say it's "normal" because there's a misconception in medical circles that everyone is the same, whereas WED patients are different. Anything under 100 is too low for us. (That's 100 nanograms per millilitre, bu just remember the number 100.) Labs and medical references will say over 20 is normal, but 20 is dangerously low for WED.

If it is possible for you to raise your ferritin with oral iron supplements, you might notice a reduction in symptom severity.

You are so wise and strong to be sticking to your guns like this instead of caving under the pressure from so many mis-informed (though well-intentioned) people. How bloody awful to have to listen to professionals lecture you kindly about something you know more of than they do! But look where your firmness has gotten you: your GP is finally listening. I hope it continues!! Good luck.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

aww thank you Beth and thank you Steve and many thanks to all.
Again I sit in tears. But! I try and I try (like we all do).
I suppose we need to do our parts in this struggle to achieve recognition.
I tell ya ..I am kinda down and out over all. But I won't give up and I am so so happy that my doc's listening etc.
So I will do what you both stated.
And yes Ann I do hope and Pray this continues with him listenting.
(will keep you informed)
Without all of you ... I would be totally lost.
Without Marilyn from the WED's Foundation... I would have no pamphlets to pass around.

You don't know how Happy that makes me !!

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi Beth I just wondered if you ever received my PM ? Thank You

OceanWalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Ahh thank you so so much Beth
Thank you all for your information and your input!!!!!!
It's been and still is a tough road.
At this time I am at a standstill but it's ok.
Something will *give* in the near future.
One day at a time.

Sincerely,
OceanWalker

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

Did you decide if you might be augmenting?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi Beth... I am unsure if I am augmenting.
So far the 1.5 mirapex is working with the dilaudid, and the rest.

But! i was a t the doc's this am and my ferritin test came back at 10

On iron supplements now

Polar Bear
Moderator
Posts: 8009
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Glad you got your ferritin checked, 10 is way too low. If you take the iron with orange juice it works better.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Thank you so very much Polar Bear:-)
Happy New Year to you all!!!

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

wow! very low! What supplements are you on? I tried ferrous gluconate for months without effect, but within weeks of switching to ferrous sulfate, my ferritin increased. I now take 2 pills daily of 325 mg ferrous sulfate, which contain 60 mg (I think) of actual elemental iron. Sometimes I use ferrous fumarate instead; the formulation I can access has the same amount of elemental iron as the sulfate.

Iron is more effective on an empty stomach, but if it hurts too much, take it with food. Either way, take a tablet of vitamin C or C-rich food or juice at the same time - vit C is needed for the iron to be absorbed, so it helps to have it right there, otherwise apparently most of the iron will just wash right through you.

Also, to ensure you benefit, don't eat high-fibre foods or spinach and don't drink coffee or tea with your iron pills. (Spinach is rich in iron but it's also rich in oxalic acid which interferes with iron uptake - you'll never get your iron quota eating spinach like Popeye.)

Be sure to get your ferritin checked again in 6-10 weeks. Maybe you'll be able to lower your Mirapex. You are going to need to, almost for sure, and with ferritin that low combined with Mirapex that high, you're probably already ... gee , I don't really know, but I would guess you're in danger of augmenting if you aren't already. It's a very good thing you caught the low ferritin and are dealing with it. Good luck!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi Beth and thanks for the good luck I believe I need it
I am taking 2x300mg of Ferrous Fumarate Iron
Yes; lol I noticed *Popeye's spinach* didn't work with me :(
I take 1.5 tablets of the 0.25MG of the mirapex
(so that's one and a half tablet

I have some WDL's action in the afternoon and some here and there....for the most part it's not too bad and I sleep at night. Wonderful compared to before.

I wondered as well if Sennekot S is not good for us?? Is it considered a stimulant. I mean I know senna's a stimulant but wondered cos it's natural if this is okay??? Thank You so much !

Happy 2014 Beth and Polar Bear and Ann and EveryOne!!!

Post Reply