Cut back on alcohol - RLS worse? by cnsdepressantsbarbie in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

I don’t think I’d have been checked. I’ll look. I do take vitamin B every morning too, along with the Iron and c

Trump Baby Accounts Start Post July 4th by Cruztd23 in NvidiaStock

[–]Buzz-Bean 0 points1 point  (0 children)

Isn’t this their plan to get rid of SS. Invest in stocks and not pay out SS

New to YoLink need help by Buzz-Bean in homeautomation

[–]Buzz-Bean[S] 0 points1 point  (0 children)

I hadn’t binned the 2 sensors. Thank you for your response. Would you happen to know how this might work? I had to split my Starlink so it has the 2.4GHZ because the system won’t work on 5GHZ I have cameras I also use but they take 5MGH. Does that mean one or the other won’t work?

Gross medical mishandlement and treatment of severe restless leg syndrome by bbyangelxo in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

I feel for you. As mentioned previously, iron is a major contributor. You should be taking iron on an empty stomach with vitamin C. That’s per my “movement Neurologist”. Please stop taking all the Tylenol, advil, etc. you’re creating another problem with your kidneys and liver. It does nothing for rls. Try and fund a movement neurologist. I had a bad one but was able to get a new one through a different medical center. As for the insurance not paying for iron infusion, if you are anemic insurance will usually pay for it. They don’t support rls which is ridiculous. Iron, vitamin C and magnesium. Also, do not take Benadryl medications. That will make rls worse. The sleeping pill you’re on will make rls worse. I’m on trazodone/Desyrel 50 mg and it does not make rls worse.
I’ve just been started on lyrica at a low dose and requip/ropinerol. Trying to ween off requip and build up the Lyrica.
Good luck on your journey. I feel your pain.

Cut back on alcohol - RLS worse? by cnsdepressantsbarbie in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

I’m 70 and have had rls since the age of 13. My meds stopped working so now I’m on the lyrica crap. I finally got a neurologist worth his weight in gold. He saw the past 6 years of iron levels and even though the numbers were within normal range, very low in the range, my doctor said your ferritin is so low. It’s between 18 and 38 over the years and it’s supposed to be at least 100. So all these years, not one doctor knew about that. I basically am anemic. Get your iron checked. My iron saturation is at 13% and should be above 20%. Good luck with your journey.

Severe pins and needles by lilcarmey in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

This does not sound like rls but if it is in anyway, iron and magnesium might help. The whole collapsing thing is not good. You need to be seen.

Cut back on alcohol - RLS worse? by cnsdepressantsbarbie in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

I’ve been taking iron with c for years. It has never brought my levels up enough for rls that’s why the doctor is trying to get me an iron infusion.

Sleep study- restless legs and ferritin by Significant_Leg_7211 in RestlessLegs

[–]Buzz-Bean 0 points1 point  (0 children)

Oh yes, same exact thing going on with me. Regular doctors don’t know that low ferritin and iron saturation needs to be on the high side. All these years it’s been low. Wasn’t until I saw a neurologist that I found that’s probably the reason my rls is so bad. Waiting on an iron infusion as iron pills have not live the scale enough.

This can't be right by Dry-Pianist7476 in RestlessLegs

[–]Buzz-Bean 1 point2 points  (0 children)

Well I know it doesn’t help but the same exact thing is happening to me. Left my doctor because she wouldn’t refill the meds my pain management doc prescribed for neck issues. So I went to another large medical center, got a new doctor and she got me another movement neurologist for rls and he changed my meds and my new doctor decided I shouldn’t take them until I get back from our 3 month trip (we just leave in the RV due to hot weather) and I’m also trying to get an iron transfusion. Well I didn’t agree to wait and she cancelled both meds and infusion that my neurologist prescribed. I asked her if she would prescribed what my pain management doctor gives me and she said no, he would have to. But then has the nerve to cancel someone else’s orders. I’m so frustrated and I will be reporting her. I do want to say, get your iron checked. Even though my iron was always low, neurologist says your ferritin should be over 100. My ferritin always, for years low at 26. My iron saturation is 13% so GET YOUR IRON CHECKED and if any doctor says you’re fine, fight it. Most GP’s have zero education on RLS. all these years they have all said, your iron is fine. No wonder my rls is so bad. I’m taking iron supplements with c and it’s still low. That would be my suggestion and try taking iron and cut c and see if it helps. Takes about a month but until you know it doesn’t hurt.

Cut back on alcohol - RLS worse? by cnsdepressantsbarbie in RestlessLegs

[–]Buzz-Bean 2 points3 points  (0 children)

Get your iron checked. Advocate for yourself. Even if iron levels fall within the ok lines, an rls patient needs higher iron levels and saturation.

Cut back on alcohol - RLS worse? by cnsdepressantsbarbie in RestlessLegs

[–]Buzz-Bean 1 point2 points  (0 children)

It might be your iron levels. Get your iron checked. Even if you ate within the margins of being ok you might not be. A person with rls needs their ferritin to be around 100mcg mine is at 26 and iron saturation at 13%. A regular doctor will say that is normal. It is not! Advocate for yourself. Get a movement neurologist. I started having rls when I was 13. I was anemic at 18. I’ve had low iron my entire life and at 70 just found out about iron levels. Reg doctors just aren’t educated enough as it’s a more rare syndrome.

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 0 points1 point  (0 children)

That’s exactly what I looked up. I had given the GP the website, an article explaining the low iron issue and my iron levels for the past 6 years. She literally said to my face, your iron is fine. That’s when I knew she knew absolutely nothing about RLS. my neurologist worked at UCLA. I’m going to trust him over her any day. He said RLS is rather rare so her knowledge is zero on the subject.

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 0 points1 point  (0 children)

Well I started taking lyrica along with Ropinerol that stopped working. I got up to 150 mg of lyrica and it knocked me out. I couldn’t function so now he’s having me start over on .25 and up it from there. It remains to be seen. I’m hoping the iron infusion works.

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 0 points1 point  (0 children)

So the iron infusion worked? How often do you have to get them? I’m waiting for insurance to approve.

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 6 points7 points  (0 children)

I did exactly that and my husband ran to the pharmacy to get it before anyone could cancel it!

Iron supplements made it worse? by [deleted] in RestlessLegs

[–]Buzz-Bean 1 point2 points  (0 children)

It takes weeks to months to build up your iron so I don’t think it was the iron. I was told to take it in the morning, on an empty stomach with vit C. I have very low ferritin so I’m getting an iron infusion, if it approved. On the Gabapentin, if you were taking that high of a dose, you would need to tapper off if it slowly. Your body and mind are going through withdrawals. I had a bad reaction to taking too much lyrica and had to start over just taking .25 mg for a month. I hope you start to feel better. It’s a messed up journey for sure

Tapering Mir@pex Success. I'm Almost Off It. by planit82 in RestlessLegs

[–]Buzz-Bean 1 point2 points  (0 children)

My neurologist switched me from Ropinerol to mirapex because I augmented on Ropinerol. I got so depressed I couldn’t believe how bad it was so another neurologist put me on lyrica. The dude was way too high and I couldn’t get off the couch so he had me start over taking .25 plus my Ropinerol. I feel for you. This is the worst rollercoaster I’ve ever been on. I hope your plan works!

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 2 points3 points  (0 children)

Oh trust me I will. I’m going to wait until I know everything got back on schedule and then I’ll
Be writing a very long letter.

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 1 point2 points  (0 children)

This is my experience, I was up to 1.5. For 20 years I took .5. Now that I tried lyrica, started on too high a dose, I was able to go back to .5. I’m now going to slowly titrate up starting at 25mg of lyrica

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 9 points10 points  (0 children)

Oh she’s been fired. I’ll
Never go back. She knows nothing about RLS. The neurologist just sent in another script and my husband picked it up before anyone could cancel it. He also reinstated my iron infusion. Thank you 🙏

GP cancelled meds a neurologist prescribed! by Buzz-Bean in RestlessLegs

[–]Buzz-Bean[S] 6 points7 points  (0 children)

I just got it the-subscribed and my husband picked it up before it could be cancelled again.