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Pretty sure it is RLS

Posted by ccstahl @ccstahl, Feb 23, 2023

Woke up early Oct 2022 with sore calves, several days later tingling in feet and lower legs along with forearms and hands. Since then progressively worse and have horrible feelings on legs cause sleep issues. Had all the tests, leg ultrasounds, bloodwork, and nerves studies all normal. Only issue was low B12 from the beginning of testing which has been corrected and all started about 8 weeks after bout with COVID. Started Gabupenton about 3 weeks ago out of desperation for some rest. My primary feels it is RLS based on symptoms but who knows…anyone have RLS that can share any thing about some successes to combat symptoms

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ccstahl | @ccstahl | Feb 24, 2023
In reply to @stevegrinstead "my situation is very rare. Only 300 people have it; please go to Mayo Clinic/Steve Grinstead...." + (show)
@stevegrinstead

my situation is very rare. Only 300 people have it; please go to Mayo Clinic/Steve Grinstead. Also, Brain and Life April/May issue/Steve Grinstead. Google Superficial Siderosis. It has caused me to develop RLS and neuropathy among the 39 symptoms. I did have a B-12 deficiency and RLS caused by nerve damage from the SS. The RLS and the B-12 is under control as long as I take my supplements and meds. If your B-12 gets dangerously low they can give you a shot. I am not familiar with gabuenton. There is a difference between "gabupenton" and gabapentin, I think. I take my meds at bedtime. I know that I have RLS because it used to wake me up at night. Also, I did a sleep study and they said that I have RLS. I googled "gabupenton" please check spelling. Hope this helps.

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That is all good information thank you and yes I fat fingered the spelling of gabapentin

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ccstahl | @ccstahl | Feb 24, 2023
In reply to @patriciajean "Hi, @ccstahl, sorry to hear about your issues! I started having RLS symptoms (along with other..." + (show)
@patriciajean

Hi, @ccstahl, sorry to hear about your issues!

I started having RLS symptoms (along with other symptoms) in 2019 and it was like torture! After about 18 months of testing and trying different meds my resting tremor had progressed significantly so my neurologist started me on Sinemet and my muscles relaxed within 1/2 hour. No more RLS. It was such a relief! I could sleep again. Prior to that I could only sleep by taking Pregabalin and muscle relaxers and still I woke up frequently.

Unfortunately, over the next year, the wearing off period brought back the RLS. I was given a sample of the Neupro patch and it works 24/7. I haven't had RLS symptoms for the past 6 months. Unfortunately, Neupro is prohibitively expensive but if your insurance doesn't cover (I think it's Tier 4) and if you're in a lower income bracket, you may be able to get help to pay for it. I have not noticed any side effects but I think it's a lower dosage (2 mg) and I have been taking it only every other day rather than every day as the effects last long enough for me. But I do exercise a lot and am pretty fatigued by the end of the day so that, in addition to the meds, helps me sleep.

I did experience RLS I think about 8 years ago and tried magnesium and it helped for awhile, so if you haven't tried taking magnesium you might give it a go. I've read that magnesium glycinate is the best-absorbed form of magnesium. But if that doesn't work and you're not opposed to it you could ask your doctor if Sinement or Rotigotine is an option, at the lowest dose.

Take care and good luck!

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That is all good information thank you! This is all so new to me I am still scrambling to find information. Six months ago I felt walked and ran did lots of cardio at gym and had no pain. Literally woke up one morning at 4am with sore calves and just got progressively worse the last 5+ months. Working with my doc to get some answers and see if we can get this under control. Will to try most anything at this point

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ccstahl | @ccstahl | Feb 24, 2023
In reply to @stevegrinstead "I had RLS. Dr. Put me on 900 mg of Gabapentin every night. Now I sleep..." + (show)
@stevegrinstead

I had RLS. Dr. Put me on 900 mg of Gabapentin every night. Now I sleep almost to good. B-12 only comes from animal sources. If you are a vegetarian you may have to take a pill I was b-12 low so now I take the pill. RLS is gone.

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So just as a follow up do you take the full 900mg of gabapentin at bed time? I take 300 and seems to do the trick but only for about 3-4 hours maybe sometimes less

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patriciajean | @patriciajean | Feb 24, 2023
In reply to @stevegrinstead "my situation is very rare. Only 300 people have it; please go to Mayo Clinic/Steve Grinstead...." + (show)
@stevegrinstead

my situation is very rare. Only 300 people have it; please go to Mayo Clinic/Steve Grinstead. Also, Brain and Life April/May issue/Steve Grinstead. Google Superficial Siderosis. It has caused me to develop RLS and neuropathy among the 39 symptoms. I did have a B-12 deficiency and RLS caused by nerve damage from the SS. The RLS and the B-12 is under control as long as I take my supplements and meds. If your B-12 gets dangerously low they can give you a shot. I am not familiar with gabuenton. There is a difference between "gabupenton" and gabapentin, I think. I take my meds at bedtime. I know that I have RLS because it used to wake me up at night. Also, I did a sleep study and they said that I have RLS. I googled "gabupenton" please check spelling. Hope this helps.

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@stevegrinstead - so sorry to hear about your disorder but glad you were able to get diagnosed. Did it show up on an MRI?

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stevegrinstead | @stevegrinstead | Feb 24, 2023

MRI Is not enough. The MRI shows blood on the cerebellum, but not the location of the bleed. To have an accurate operation to fix the leak. You must know the accurate location to operate. Case in point, UNC Memorial in Chapel Hill located my leak in the wrong place. Mayo Clinic Minnesota located it in the correct place. Who was I to trust? Mayo opened me up all the way, from UNC’s location to Mayo’s. 10” cut along my spine, took 5 vertebrae into so they could see my dura, explored down till they found my leak and sewed it up. I will never recover from the operation. Just in case you went to Mayo Clinic/Steve GRINSTEAD, minor corrections; the operation was 8 hours not 4, and I never came back to Mayo.

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ccstahl | @ccstahl | Feb 25, 2023
In reply to @merpreb "Good morning. I've had RLS for years. I take a med called Requip but it has..." + (show)
@merpreb

Good morning. I've had RLS for years. I take a med called Requip but it has some bizarre side effects. One is wanting to shop too much--now you all know my weakness. I do have to watch it. WHy a pain med for RLS? DId you see a neurologist and not a PCP?

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Gabapentin is routinely prescribed for RLS from what I understand and it does work pretty good. You had mentioned in a post you take Requip and don’t have the symptoms anymore…so does that mean they feel normal or you just don’t have the urge to move them but still have odd feelings?

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1 reply
Merry, Alumni Mentor | @merpreb | Feb 25, 2023
In reply to @ccstahl "Gabapentin is routinely prescribed for RLS from what I understand and it does work pretty good...." + (show)
@ccstahl

Gabapentin is routinely prescribed for RLS from what I understand and it does work pretty good. You had mentioned in a post you take Requip and don’t have the symptoms anymore…so does that mean they feel normal or you just don’t have the urge to move them but still have odd feelings?

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I didn't know about Gabapentin. I've had it for treating pain before. It's good to know that there are options out there.

I do think that i can feel some faint twitching but not enough for me to pay attention to. They aren't enough that my legs move at all. But sometimes that does happen late afternoon or if I'm late taking the med.
It's such a weird disease, right? Some screw up making our legs move on their own without us giving it the ok?

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1 reply
ccstahl | @ccstahl | Feb 25, 2023
In reply to @merpreb "I didn't know about Gabapentin. I've had it for treating pain before. It's good to know..." + (show)
@merpreb

I didn't know about Gabapentin. I've had it for treating pain before. It's good to know that there are options out there.

I do think that i can feel some faint twitching but not enough for me to pay attention to. They aren't enough that my legs move at all. But sometimes that does happen late afternoon or if I'm late taking the med.
It's such a weird disease, right? Some screw up making our legs move on their own without us giving it the ok?

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So do you have PLM? I don’t have any movement mostly just pain and those uneasy feelings. Also movement does not really relieve the uneasy feelings…but yes odd for sure

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2 replies
Merry, Alumni Mentor | @merpreb | Feb 25, 2023
In reply to @ccstahl "So do you have PLM? I don’t have any movement mostly just pain and those uneasy..." + (show)
@ccstahl

So do you have PLM? I don’t have any movement mostly just pain and those uneasy feelings. Also movement does not really relieve the uneasy feelings…but yes odd for sure

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Ah, ha! I have never heard of this. It's a new one for me. But I'm not surprised that it exists. No I do not have PLM that I know of. Requip stops my Rls. None of my movements when they happen are similar to PLMD.

This is what PLMD is:
People with PLMD experience repetitive jerking, cramping, or twitching of their lower limbs during sleep. These are known as periodic limb movements (PLMS) and happen every 5 to 90 seconds for up to an hour.

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Merry, Alumni Mentor | @merpreb | Feb 25, 2023
In reply to @ccstahl "So do you have PLM? I don’t have any movement mostly just pain and those uneasy..." + (show)
@ccstahl

So do you have PLM? I don’t have any movement mostly just pain and those uneasy feelings. Also movement does not really relieve the uneasy feelings…but yes odd for sure

Jump to this post

I also had no idea that B12 shots could help. What determined this for you?

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