FOR ALL OF YOU PRIMARY RLSers EVERYWHERE

Here are some posts from a maternity website talking about what sounds like primary RLS.

Restless legs

carlypeach

Posted 05/24/2012

I have Restless Leg Syndrome and have suffered with it most of my life. It is worse during pregnancy. I have read that the MTHFR mutation is linked to RLS and am curious to see if any of you have it. I have noticed that my symptoms have improved since I started treatment for MTHFR and am hopeful that my RLS will go away.

Comments (5)

aprildenna

Posted 05/24/2012

I don't have Restless Leg Syndrome, but my doctor said 2000 I.U's of D3 is supposed to help. He had me try D3 for my leg cramps. I take 3000 I.U's at bedtime and it seems to help.

My beautiful daughters: Lily 9/24/09 & Charlotte 7/16/12

Ask me about MTHFR! I'm here to help

SurvivingMTHFR.blogspot.com

[e-mail]

mmamaleh

Posted 05/24/2012

I get it occasionally and this homeopathic treatment is the only thing that helps me....

Rhus toxicodendron

herbs2000.com/disorders/res......

Hi Carlypeach,

I have started MTHFR treatment lately (diagnosed with fertility testing with the A form, heterozygoes) and for the first time in my LIFE been able to have a solid night's sleep without a 20 mn very hot bath --or two or three...and stairs... and slow scissor kicks in the air lying on your back...I'm sure you know the drill... KissSo yes, I have the MTHFR and the MTHF supplements worked. Miraculously!!!!! Star (very high does folic acid and B12 and powdered magnesium helped somewhat in the past, but this is complete relief!) I think there is a great chance your RLS will go away and I am very happy for you!!!!!

I do wonder if some of those who get RLS in pregnancy might have the MTHFR defect themselves (rather common) and not know it. If this could be considered a diagnostic indicator, then they should get tested as not only they, but their baby, would benefit from them taking MTHF rather than folic acid. (Because people with MTHFR cannot process folic acid, so their babies may be at risk of several issues without proper supplementation.)

QUESTIONS for the EXPERTS (I hope we are not they, Carlypeach!): 1. I am early now in a pregnancy and am wondering if it is safe to be taking my working dose of 5mg of 5-MTHF every night before bed in one hit, or whether I should be spreading out the dosage across the day (which doesn't seem to work as well for sleep so I may need to increase it then) in order to not inundate the baby with a big dose at once? Or does MTHF have a gradual release?

2. Also, is it safe to use the presence of symptoms (in my case RLS) as a gauge for dosage even when pregnant? Or am I at risk of exposing the baby to too much? (yes, I realize this has not been adequately studied, so educated guesses are what I'm looking for, as I need to make regular decisions about it on some basis...)

Posted 04/28/2013

One thing I forgot to mention was that I had read that RLS may be partly caused by low iron levels reaching the brain (so your blood levels may test ok even if it's not reaching your brain, I guess). I tried many iron supplements, but found Nature's Plus Hema-plex was the only one that worked for me. It has other things in it than iron, so perhaps it is that balance that helps it absorb, or perhaps it is that it is hi dose chelated iron. My iron levels have risen from low end to normal range on it, I tend to take it every other day, but have recently started splitting it in half. I would be curious if other RLS sufferers have had luck with chelated iron or this supplement in particular?

"What is Chelated Iron?

Chelated iron has undergone a process that binds it together with amino acids. This process makes the iron more similar to iron that occurs naturally in foods.

Why is Chelated Iron Used?

Some believe that the process of chelation makes the iron more easily absorbed through cell walls."

Read more: Chelated Iron Vs. Regular Iron Tablets | eHow.com ehow.com/facts_5625439_chel...

I just wanted to be clear that it is not JUST the MTHF that works on its own for me, but a combination of supplements in concert, and MTHF was just the last one I added the seemed to finally take it all away.

[Hidden]

Can you please explain for a foreigner what MTHF stands for?

[Hidden in reply to Hidden]

Methyl folate-basically. A supplement. I predict this is the end of suffering for those with primary rls and possibly secondary. If this is you Swedish a short trial run of methyl folate, at night, might be your ticket. To make a long story short those with this mutation can't breakdown and absorb frolic acid so you have to ingest it in a form that is already broken down. That form is called methyl folate. Remember this, no folate means no dopamine which means lots of rls.

[Hidden in reply to Hidden]

Thanks for quick answer! Aha, we call it folsyra in swedish. I've been taking that together with B12 and B6 for years due to my ileo ostomy.

[Hidden in reply to Hidden]

Omg they removed your colon....why??? Did it cure u? How bad is your rls?

What do you think is causing your rls?

[Hidden in reply to Hidden]

I have Morbus Crohn, and they removed my rectum 1979 and my colon 1981. I'm fine without them, my ileo ostomy is working perfect ( pepper, pepper, as we says here in sweden) I do think that an inflammation somewhere in my body system, the cells?, is causing all my dieases. I had diagnose MS for a couple of years and polyneuropathi and artrithis and I am allergic to a lot of things as well. I am surviving RLS with a spinal morphine pump since december 2013

[Hidden in reply to Hidden]

I agree with u, your body says I'm under attack and refuses to release any stored iron and rls results. R u willing to try the chelated bioavailable iron on an empty stomach during an attack?

[Hidden in reply to Hidden]

My problem withiron is two: 1) I cant take mouthly taken iron up because that is the colons work, and I do not have the colon. Injections is the only way for me to get iron supplemet. Iinjections are avaliable here in Sweden for RLS patiens with ferritin below 75.

2) I have very good serum ferritin level, in fact 233, so I wont get any injction even if my doctor knows that any inflammation in the body risens the ferritin. Columbi egg. But I am very pleased with the morphine pump. it gives me 96 microgram/ day and it takes both pain and jerkings away.

[Hidden in reply to Hidden]

I don't understand? Ostomy is attached to lower portion of small intestine, iron is absorbed at the top of the small intestine in the duodenum. You should be able to absorb iron pills the same as any vitamin or nutrient in food, right?

Well since you're still suffering I guess the infusions did not work in the long run. Did they at least work the day you got them?

I have a love/hate relationship with mother nature. I know your body is withholding iron because it is under attack so it's not a quantity issue but a release issue.

Do homework Sweden. Check out the Eat Right for Your Blood Type website - especially if you are a blood type b, which I'm guessing you are since you have MS. Check out the "water cure" by Mirani and "watercure 2" by Dr. Baja something. I'm doing it right now and it has helped the ibs more than the 100 other things I have tried including, magnesium, homeopathy, acupuncture, niacin, biotin, acetylcholine, bromelain, probiotics, vitamin c, high fiber, low fiber, oregano oil, graprefruit seed extract, - I could go on forever.

[Hidden in reply to Hidden]

I do not have MS , I HAD the diagnose for a couple of years. But now I am totally free from all symthoms. I havebloodgroup AB+.

And as I havemy spinal morphine pump I do not suffer fromRLS any longer. I am followinga anti inflammatory diet since january in order to not get any moore diseaes. That is enough and whatI am very happy and pleased with.Thank you for all your advices, but I thinkthat different people needdifferent treatments.

[Hidden in reply to Hidden]

Yes I agree, don't change a thing.

[nightdancer in reply to Hidden]

That morphine pump sounds heavenly from an RLS point of view and a pain perspective. You are RLS free, so do not change a thing, even the simplest sounding supplement could screw it all up.

[Hidden]

Hi as a sufferer of rls I am very imteresred in this info.Could you tell me which brand of MTHF you recommend and where you purchase it? Thankyou

[Hidden in reply to Hidden]

No, we must do this together. Go to it Ms. P. solve the riddle. This theory is in its infancy. Brett is the only one I know on here that has had success with folate. Let's all try methyl folate And chelated iron on an empty stomach at night or during an attack for one week - no more. Then let's compare notes. We may have to add in methylated b12 and b6 and magnesium for 100 percent cure. Start with folate and iron....go to it!!!!

[Hidden in reply to Hidden]

Hi what quantity of methyl folate would you recommend nightly I will trial

[Hidden in reply to Hidden]

No idea lets all research. And see how much we want to dare

[Hidden in reply to Hidden]

Yes its worth a try

[nightdancer in reply to Hidden]

sounds like much more research needs to be done before this ever happens.

[nightdancer in reply to Hidden]

you are pushing this, and you have "no idea?" How very odd.

[jimeka in reply to Hidden]

Morning Healing Ground, I will give this trial a shot, once I can get hold of some folate. I have had a look at this Water cure that you are on I went on watercure .com, which was first recommended to me 4 years ago when I was diagnosed with MS. ,Your bodys many cries for water' by Dr F Batmaghelidj, do you know of this book?

Also I posted on here but have no replies as to if there is any association of RLS and menstrual cycles. I am 58 and still have them, and my RLS is worse when it is due. My RLS became more apparent with my first pregnancy when I was 29 and has got worse ever since. I have endometrial hyperplasia, and was told yesterday that I need a hystorectomy. I have an inability to store ferritin, so my levels are always low, I take 305 mg of iron everyday, along with 500mg calcium, and 250mg magnesium, and 500% of the daily vitamin D allowance for the MS. I have always being anaemic, my RLS , anaemia and inabilty to store ferritin is hereidty, any suggestions, thanks Jimeka

[Hidden in reply to jimeka]

I love the water cure so far and I did read about that Indian doctor. And I never love anything. Let's stick with it! Are u blood type b? Allegedly all with ms have b and can benefit from Eat right for your blood type by dadamo. If you are losing your sanity with suffering from rls then it would buy harrows methyl folate from pureformulas.com and take what is recommended on bottle. I would also buy easy iron from same place and take one or two capsules before bed on an empty stomach. You might also want to try coenzymated b6 at night. If you don't sleep like a rock I will spend the entire next week researching ms until I find the latest greatest treatment. You know why they want to remove your uterus....because they can. If it were a vital organ they would find another way. Let's do some research on that as well

[jimeka in reply to Hidden]

Thankyou so much, Greatly appreciated. To be fair to my gynaecologist, she is doing this as a last resort. I would not have the coil fitted, so I am having to take progesterone tablets to try and stop the bleeding. Have bled every day for 4 months, but yesterday, passed large amount of uterus lining, so removal is on the cards. They wanted to take it out 12 years ago, but I have stood in faith all of this time for healing, I am not giving up yet. Again thankyou Jimeka

[Hidden in reply to jimeka]

That's Jarrow not harrow methyl folate. Please please research "anemia of chronic disease" and see if this is u. They say that taking iron is useless and can offset what your body in its own infinite wisdom is trying to accomplish. Plus if you take iron during the day and it gets stored your brain will NEVER have access to it. You literally have to sneak your brain some bioavailable iron at night on an empty stomach. Your brain will suck it up from your bloodstream like no tomorrow. Then it has to be repeated again the next night. Ultimately we want to find and cure the source of our body's stinginess with iron. Pure formulas does not charge tax or shipping and if u use promo code next10 you will get a discount.

[nightdancer in reply to jimeka]

I had wicked endometriosis and cervical cancer. The best thing I ever did was get that hysterectomy at the age of 29. no more cancer issues, no more endometrial pain. I used to ball up on the floor and lay on the cold tiles to just get some relief, or to keep from passing out. I am also 58, and at this age, we do not need those parts any more, and if they are giving us trouble, I say do get rid of them. Then you go into surgical menopause (if ovaries are removed) and that is intense, but it is over in 6 months, instead of having hot flashes for a decade or more like a lot of women that I know. So, to answer you about the menstrual cycle there are a few people in my groups that do say that they feel some connection between your cycle and RLS. Could be loss of blood and you are already anemic. have never missed my "lady parts" ever. It is wonderful! Apologies to the men in the group. LOL my doctor says the less parts the better. You will not be sorry, if you have endo-hyperplasia, especially, it will never get better and can get HORRID< I promise you. Worst pain ever in my entire life, and I know pain.

[jimeka in reply to nightdancer]

Thankyou Nightdancer, appreciate the advice and the concern Have a good day, Jimeka

[Hidden in reply to jimeka]

Jimeka, maybe you should avoid all kind of seeds, even weat,. The contains fytin/fytat acid that blocks iron and some other stuff to be stored in the body.

[jimeka in reply to Hidden]

Thank you Swedish, I will look into this. Help much appreciated Jimeka

[nightdancer in reply to Hidden]

Never take iron or Methyl-folate without consulting your doctor first. Can't just tell people, "

"Let's all try it". Google iron overload first and if you are not low on these supplements, you should not take them ever off the advice of someone here. The idea has been shared, but really bad idea to ask the whole group to start chelated iron. Iron overload cam kill you, quite literally. I have done the infusions and the whole 9 yards,. IRON just does not work for everyone. That would be way too simple.

[RLSMTHFR]

YES!!!! Just joined the site only to reply to carlypeach and encourage others to test for MTHFR and try methylfolate and hi dose B12, my story is the same as hers. Primary RLS all my life. Tried everything. Finally relieved by 5mg nightly of MTHF and B12 injections, as well as, indeed, the same brand of iron you are taking. Glad to see I'm not the only one. Backed off the hi doses (as overdosed on B6 at same time, which worried me) and the RLS came back, have just been keeping it at bay but am thinking that RLS is really a symptom that this balance is off (for me at least) and I should do more than just treat the symptom, I should try to eradicate the underlying deficiencies. Particularly as have had irregular pap smears of late since backed off, and low folate and B12 have been shown to be connected to that as well in studies...

Also I've always been dehydrated and adding lime to water allows me to drink so much more and seems to help a bit, although not enough on it's own.

I'm not saying this will work for everyone, just wanted to add a strong YES that I had tried everything and the same combo worked for me. It is so disheartening when it disrupts sleep and life and can't seem to be beat, but don't give up hope! Good luck everyone.

[Hidden in reply to RLSMTHFR]

You are only one to cure yourself of hypo and rls. Do you take folic acid b12 and iron with morning meal? Or how and when do.

[RLSMTHFR]

I should add, I found it can be tricky to get the balance right when doing hi dose, too much of methylfolate without methylB12 (in form of methylcobalamin shots and lozenges) to balance, and RLS would return. (Also, I may have had B6 overdose--which is quite rare-- because I wasn't taking methyl B6, since am MTHFR ...)