I'm finally here....

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TheDreamer
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I'm finally here....

Postby TheDreamer » Mon Mar 26, 2012 8:44 pm

....I've probably had RLS/WED all my life.....I remember having these weird sensations in arms and legs when I was a child. But, I couldn't say anything, because I'm not allowed to be crazy. Mom always said I was a kicker in bed.

Then a few years ago, I had first sleep study....and they found stuff wrong, and I got to visiting various forums and such, and RLS would come up as something else I might have. I asked my primary doctor about it once, and he glanced at my PSG summary and said no. Lots of people tell me that's not how its diagnosed, etc. The PSG said no PLMD, but a number of leg jerks were recorded during the night. Though there's also the factor where the first night in fresh sheets in a fresh bed always seems magical. (too lazy to do that at home, so its often the first night in a hotel where I get those special nights of sleep....)

I recall the old tale of ivory soap.... and it explains why its so important to shower just before bed, and sometimes I have to get up and wash my legs so that I can sleep.

Last year I started seeing a Neurologist/Sleep Medicine specialist....and looked me over and asked what I was taking for my RLS.

We first tried Mirapex/Pramipexole....but it caused bad sinus congestion, and constipation. I stopped after I gushed blood from one of my sinuses. Otherwise, I was starting to wonder what I was going to do with not having had a BM in several days. Apparently its considered an unusual side effect of the drug, not one my doctor had seen before. But, somebody on facebook commented about it....

So, now I'm on Requip/Ropinirole. Only take it before bedtime....it seems to help my sleep a bit, but hasn't done much for my day time symptoms (in fact, sometimes they feel worse.)

The Neurologist tested my Ferritin (among other things) when I first started seeing him. Which I later learned is a normal thing to do in relation to RLS. And, only interesting, because my primary had been testing my Ferritin levels quite regularly before...and for a while he had me taking iron supplements. This worried my relatives a lot though, because Thalassemia runs in our family.... But, in the end my primary doc told me to stop giving blood so often (he wrote in my file that he wanted me to stop giving blood altogether, but I had refused. The strange things I find having finally asked to see my records....)

So, I've been trying to learn what I can about the various things about me and be in more control....

The Dreamer.
You may be a dreamer, but I'm The Dreamer, the definite article you might say!

Polar Bear
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Re: I'm finally here....

Postby Polar Bear » Mon Mar 26, 2012 10:22 pm

Hi Dreamer and welcome to the Discussion Board.
Sorry, but I only have a few minutes at the moment.
You say that the Requip is not helping your daytime symptoms, so if you have symptoms more than just evening/night I wonder why you haven't been prescribed medication to deal with the daytime symptoms also.

When your ferritin was checked what was the level. Drs often reckon that 20 is normal but us sufferers of WED/RLS need it to be up around 50 and preferably nearer 100, especially if taking a DA such as Requip.

The link in my signature provides quite a good summary of treatments.

I can relate to your washing your legs to get to sleep. Prior to using medication I often used to put my feet into a bucket of really cold water and splash it up to about my knees for about 20 minutes which would give me enough relief to hopefully get over to sleep.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: I'm finally here....

Postby ViewsAskew » Tue Mar 27, 2012 4:59 am

I always have to put lotion on my legs and arms :-).

Welcome, Dreamer.
Ann - Take what you need, leave the rest

Managing Your RLS

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TheDreamer
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Re: I'm finally here....

Postby TheDreamer » Tue Mar 27, 2012 1:28 pm

When I was started on RLS treatment, a blood test was ordered. Checking the records I recently got, the Neurologist had ordered tests to check Ferritin, Magnesium and Vitamin B-12. But, I couldn't find record of results among the records that I got from him. Primary seems to want to be difficult, I haven't said anything about switching Primaries...but its a recurring thought that's more of when than if now. But, I did find the results among my Primary's records. Probably got mixed up because I had done a draw for primary the day before I did the draw for Neurologist, and both at the same collection/lab facility.

Ferritin 50
Magnesium 2
Vitamin B-12 1132

Maybe I don't need the B-12 supplement I've been taking because I'm on Omeprazole.

Wondering if they actually communicate to each other. Neurologist has letters to primary about what he's doing. Primary only has notes questioning what the Neurologist is doing and him altering meds prescribed by neurologist at first (when I told Neurologist that primary said to do it and that he had spoken to him...Neurologist said he had been spoken to about it, and said in the future make primary talk to him first and then he would adjust the meds he's prescribing) I told primary this, and he put in my file that I refused to comply.

It could be that its because there's a (alleged) sleep specialist in the same practice as my primary...but he doesn't want to listen to me, and he's too busy with his other specialties (pulmonary & critical care).... Once told me that my cpap compliance report showing that the machine was on all night, disproves that I'm awake most of the night with it on.

When I was taking iron supplements for my Primary, he said he wanted to get my Ferritin level up to 100. (from 67)....he did get up to 97. Though the test that started the iron supplements, my level was 9. Though I had given blood a few weeks earlier and then had tried to do plateletpherisis ... but failed the iron test, twice. Somebody at work was about to start chemo/radiation...so there was a platelet drive for him.

I'm still donating blood, AMA, though....

The Dreamer.
You may be a dreamer, but I'm The Dreamer, the definite article you might say!

badnights
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Re: I'm finally here....

Postby badnights » Sun Apr 01, 2012 2:37 am

Hi Dreamer\
Reality check here, your blood donations are harming your health. You're not a hero to be helping someone else at the expense of your own health. You're going to have to find a different way of helping people, maybe awareness campaigns to get other people to donate blood, or donating time or money instead. Or just praying, or whatever suits your character and beliefs; but something that doesn't harm yourself. You count too.

Did I read correctly, that your ferritin increased from 9 to 50 during the time you were taking supplements? You might need to keep taking them, after making sure it's ok with your doctor. WED bodies seem to consume iron faster than others, even without blood donation. You have the complication of Thalassemia in your family, so definitely discuss things with your doctor. Is there any reason to avoid iron supplements? I understand if you have the disorder, and if you're getting blood transfusions, you might need to avoid supplements to avoid getting too much iron; but you don't actually have the disorder, do you?

Your primary sounds up to date: ferritin for WED should be over 100, and that's fairly recent knowledge; also, the mere fact that he (she?) knew about the consequences for someone with WED of donating blood, shows a decent level of knowledge about the disorder. I suspect the main problem between you two is communication. Since it's so important to be on the same page, maybe it is best to look for a primary with whom you're compatible; that can make a big difference. But it's so hard to find any who knows anything about WED (sigh).
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.

Baffledsilly
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Re: I'm finally here....

Postby Baffledsilly » Sun Apr 01, 2012 6:21 pm

Welcome Dreamer,
You came to right place to find the information you need to help you and your doc find the best treatment for you. An informed patient helps a Doc figure out what is right for you. I agree with the not giving blood part, your already low on iron, giving it away won't help. Perhaps you could volunteer at a blood bank, that would also be helping. Hope you find a treatment that works for you, and a Primary who will listen to you, I know I am having a hard time finding one that will help me with my day symptoms, so I wish you all the best in your battle with this less than cooperative disease.

Take care,

Ian

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TheDreamer
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Re: I'm finally here....

Postby TheDreamer » Sun Apr 01, 2012 7:30 pm

Primary says I don't have WED though. Wants me to stop taking the meds that the Neurologist has prescribed. Since its interfering with his treating the condition that I was sent to Neurologist for, EDS/Hypersomnia.

Normally, I've bordered on too much iron...though I suppose now due to dietary changes, less red meat, or more things that inhibit iron absorption, etc. I don't rebound as fast. Also, I don't normally give as often as the blood mobile thinks I can give...but that time was an exception. Sometimes a year or two passes between donations.
You may be a dreamer, but I'm The Dreamer, the definite article you might say!

badnights
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Re: I'm finally here....

Postby badnights » Tue Apr 03, 2012 2:17 am

Ouch. that has to be figured out first. And from your first post, it sounds like you and your Neuro/Sleep doctor are certain you have it. First I guess I have to suggest you review the 4 criteria and question yourself as to whether each one is true for you.

then, if that checks out, ditch your primary.

OK, I 'm actually not sure if you should, but it's sounding like he's more than a little hard to deal with.
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.

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TheDreamer
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Re: I'm finally here....

Postby TheDreamer » Tue Apr 03, 2012 12:57 pm

I've been thinking of ditching primary for a while, and lots of people have suggested it before....just never done it before, and I'm basically lazy.... but, I'm thinking I'm going to shoot to find a new primary before my next annual physical....

The Dreamer.
You may be a dreamer, but I'm The Dreamer, the definite article you might say!

Chipmunk
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Re: I'm finally here....

Postby Chipmunk » Wed Apr 04, 2012 1:35 am

Sounds like you might want to get your iron levels checked every 3-6 months. If they're high, you can give blood, if low, you can continue supplements.

I also stay with a sub-par doctor longer than I should...I'm always afraid I will get someone even worse...
Tracy

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


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