For those seeking rest from RLS

[ALB1Amy]

I have suffered years actually decades of Insomnia caused by RLS amongst other things. To make a long story short, my amazing Internist did a very thorough blood testing on me and found that while my hemaglobin was high, my ferritin was low. She consulted with a hematologist and I have a form of Iron Deficiant Anemia. After 4 rounds of Iron Infusion (Iron given by IV at the hospital here in Canada) once every 2 weeks, I can finally say that my restless legs have stopped. I encourage everyone who suffers from RLS like myself to pursu blood tests and push your doctors to at least try Iron Infusion therapy. While I’ve had bad reactions to it, it’s rare and I was never concerned. Besides, the end result is worth it.

[Joolsg]

That is fantastic news Amy. You are lucky to have such a great doctor ( internist).

There have been many people on this site who have reported improvement after iron infusions.

The USA and Canada do seem to be way ahead of RLS research and treatments. It's very difficult to get iron infusions here in the UK because most RLS experts insist there is no need if serum ferritin is around 75.

I hope others on here can push for iron infusions and find a doctor like yours.

Thanks for sharing, it's great to hear a success story.

Jools

[ALB1Amy in reply to Joolsg]

Actually, I’ve been seeing the internist for other physical issues and blood tests showed iron deficiant anemia along with other medical issues. So, the Iron infusions were just a small part the medical treatment plan. The result of my RLS calming down was an unexpected result of the Iron Infusions.

[Joolsg in reply to ALB1Amy]

But a wonderful extra! I hope it resolves your other health issues as well.

[nightdancer]

That is great! Wish getting ferritin up with infusions would work for everyone, then we would have an answer/treatment for all. But so GLAD for you. Long may it last. When I had my infusions, I had them a week apart and we got mine from a level of 6 up to 162, and it did no good for me. You are soooo lucky it is helping you. Hope it keeps up.

[LotteM in reply to nightdancer]

Hi nightdancer, what I thought before when you wrote about your infusions, and what I still think is: did your levels go up sufficiently? I remember from the IRLSSG paper on iron that there were some people benefitting from infusions that started with ferritin levels well over 100 (something like 143 if I remember well). With this new knowledge, would you consider to discuss it again with our doctor to give it another go? It would be so great if it would help you in the end.

[Graham3196 in reply to nightdancer]

Hi Just adding to LotteM's comment about ferritin levels.

First the revered Doctor Buchfuhrer and the "the guys at Johns Hopkins," as he refers to them, are talking about getting your ferritin up to 300 to 350 and a few people on this forum and elsewhere have mentioned that they didn't get any relief until they reached levels of 300 to 350 (from memory) In my case I reached 343 and so far it hasn't worked but still 2 weeks to go before I reach the 12 week "give up" point.

Secondly there was a post about a Spanish Doctor who uses transcranial ultrasound to measure the iron that has really reached the brain. I haven't been able to find anyone in Australia who can do this, His experience is that a patient can have a really nice ferritin level in the blood but none (or almost none) in the actual brain fluids. Any chance of you going on a holiday in Spain so we can watch your progress? Perhaps RLS.org could organise a bus tour for 50 people (guinea pigs) The other part of his work is that he apparently devised an infusion mix that works for these people so he can increase their iron where it matters. He certainly has quite a few published papers to his name so we need some real expert to investigate and see if he can help. Can we ask the IRLSSSG to investigate on our behalf? Perhaps someone understands cloud funding enough to initialise a collection to pay some expert like Doctor Early?

Any way, in real time, perhaps you could try a few more infusions and see if you can get to 350 just to push to the limit

Cheers

Graham

,

[RoMB in reply to Graham3196]

Hi Graham, I am Spanish although living in Dublin. I travel a bit to Spain and I would love to know which doctor are you referring to and I will contact him for an appointment

[Graham3196 in reply to RoMB]

The source of this is a forum participant named Chilandres about 20Jan19. I don't know how to search for words in answers, It appears to me that the search function only finds words in posts and not replies.

Anyway

Here is the Wikipedia summary

Diego García-Borreguero is the Director of the Sleep Research Institute in Madrid, Spain.[1] Until 2005, he was Director of the Sleep Disorders Center at the Department of Neurology of the Fundación Jiménez Díaz (Autonomous University of Madrid). He has completed fellowships in sleep medicine and sleep research at the National Institutes of Health in Bethesda, Maryland, USA and underwent residency training at the Max Planck Institute in Munich, Germany. He received his MD from the University of Navarre (Pamplona, Spain) and completed his PhD at the University of Munich.

García-Borreguero’s main area of research is movement disorders in sleep, and restless legs syndrome (RLS) in particular. He has published extensively in this field in international peer-reviewed journals. He is Vice Chair of both the International and the European Restless Legs Study Group and a member of the Medical Advisory Board of the Restless Legs Foundation. In addition, Dr García-Borreguero is President of the Spanish Sleep Society. He is also a member of numerous professional organizations related to the field of sleep science, such as the World Association of Sleep Medicine (WASM) and the American Academy of Sleep Medicine (elected fellow).

Garcia-Borreguero has published widely in the field of sleep, and particularly in RLS."

Graham has googled sleepinstitute.eu/the-medic... and it looks like most other sleep clinics. In my brief look I didn't see anything about the ultra-sonic transcranial work. This may be work he is doing with some other organisation.

Thats the best I can do at the moment and I am spending any spare time seeking more.

Cheers

Graham

[RoMB in reply to Graham3196]

Hi Graham, that’s brilliant! Thank you for the info 🙏 I will let you know how it goes with me contacting him 😊

[Graham3196 in reply to RoMB]

You just promoted your self to Chief Guinea Pig Its great to have someone who can speak the lingo and hopefully be on site to learn about this promising development.

Thanks from all of us.

Cheers

Graham

[Chilandres in reply to RoMB]

Hi RoMB, hi Graham, i just found this post. I’m Chilandres, i live in Chile and I’m seeing doctor Garcia-Borreguero. Anything you need to know about him and transcraneal ultrasound i can tell you. Not like a doctor but a patient. And we can talk in spanish 😁.

Así que lo que necesites tío. Jajaja

Abrazo

[RoMB in reply to Chilandres]

Hahhahha, Muchas gracias! But maybe we should speak in English so everyone can learn

Where are you seeing that Doctor? In Chile or in Madrid?

Could you tell us about your experience, please?

Un Abrazo 🤗

[Graham3196 in reply to nightdancer]

I just remembered Doctor Buchfuhrer's comment that only two of the available infusion products will help RLS patients.

He said - "You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. Make sure your doctor understands this point." Note that these are the USA names. They have different names in different countries.

Just in case the formulation you received was not one of these.

Graham

[OFgc]

I'm very happy for you.

Do you happen to know if such a severe Iron deficiency manifest in other ways as warning signs one can pay attention to?

[Graham3196 in reply to OFgc]

If you don't mind me talking about the family yet again. My daughter visited the doctor for some other reason and it was found that her ferritin was 5 She had RLS just about every night. The doctor expressed surprised that she was still standing. So it appears that you can be as low as you can go and not display any specific symptoms. In retrospect she realised how tired and "low energy" she was. She was still dancing with a Hip Hop ensemble! So the answer is that you might have no other symptoms except RLS and feelings of tiredness.

Perhaps we should all get a regular blood test every year or so. There are so many cases where a few dollars of preventative medicine would have saved thousands of dollars and years of misery later on. Treasury doesn't want to make this a free service because they only care about this years budget. Of course they can put an exact monetary value on a year of your life. OOps some politics slipped out.

[ALB1Amy in reply to Graham3196]

My ferritin levels bounced between 4 and 6 for about 10 years. I’ve been dealing with other health issues which lead me to a wonderful Internist. She noted that my hemoglobin was high but my ferritin was low. She and a hemotologist officially diagnosed this one aspect of my health as iron deficiant anemia. I suffered low energy (still do due to other health issues) and the RLS. I had 4 iron infusions spread out every 2 weeks. It wasn’t until after the 3rd infusion that I noticed I was not having the restless legs. I get my CBC checked on the 25th of this month.

The iron used, I believe, was called “Venofer”. Here in Canada it wasn’t covered under our health plan so I did have to pay for each one. Just the iron. Not the treatments. It was just under $200 for 200cc’s (I had to have a lower dose spread over longer amounts of time and at the slowest rate possible as I had fairly severe “allergic” type reactions to it. They had to pre-dose me with antihistamines and gravol and a steroid, get more midway through and again at the end. Well worth it though for some rest from the RLS. (And to think I wasn’t even seeing the doctor for the RLS.

[Zbirth1]

I’m so happy you are finding relief & getting some peaceful sleep. 😴😴😴

I’ve Had ron infusions for several years. Sadly the last one didn’t help but I also had gone into full Augmentation by then (which is a whole nother story 😏). They have found that high H&H (hemacrat & hemaglobin) & low ferritin levels are more prevalent than anyone knew, especially in patients with RLS & iron infusions are Being done on more & more sufferers. For many people it decreases or stops their symptoms. (YAY!). Your infusions are very different from how they do them here. They only infuse iron every 6 or more months & once you’ve had 3 doses you go to yearly if your H&H is ok & fFerriten level above 100 ( over 100 is critically important!) so I imagine you’re getting a lower dose but hey, whatever works is a reason to celebrate! Enjoy your new found freedom from the agony of RLS. Go do something nice for yourself. You deserve it❣️

🥳💐🥩🏖🍷🐱

[ALB1Amy in reply to Zbirth1]

My ferritin levels bounced between 4 and 6 for about 10 years. I’ve been dealing with other health issues which lead me to a wonderful Internist. She noted that my hemoglobin was high (above the normal and I just went online and checked.... my hematocrit (?) was low. Weird. But then my body is weird..... but my ferritin was low. She and a hemotologist officially diagnosed this one aspect of my health as iron deficiant anemia. I suffered low energy (still do, due to other health issues) and the RLS. I had 4 iron infusions spread out every 2 weeks. It wasn’t until after the 3rd infusion that I noticed I was not having the restless legs. I get my CBC checked on the 25th of this month.

The iron used, I believe, was called “Venofer”. The first treatment was 300cc’s but due to a severe reaction they dropped the rest down to 200cc’s (I had to have a lower dose spread over longer amounts of time and at the slowest rate possible as I had fairly severe “allergic” type reactions to it. Typically, they treat with 3 infusions. First 2 being 300cc IV bags and the last being 400cc bag. A total of 1000 cc’s Then you must wait 3-4 weeks to get blood tested as it takes that long fornit to be absorbed into your system properly.

They had to pre-dose me with antihistamines and gravol and a steroid, get more midway through and again at the end. Well worth it though for some rest from the RLS. (And to think I wasn’t even seeing the doctor for the RLS.) I consider myself lucky that I am finding relief. I’m questioning some people’s comments as they seem rather annoyed that I am finding relief. I am merely letting others know that this treatment, while not intended for the RLS, has helped and if possible, discuss with your own family physician or seek out a specialist to try for yourself. Anything to get some rest. We must be our own advocates and not be jealous of those that are finding relief. (As I’m finding some comments to be coming across as nasty and rather annoyed that the Iron has helped me.

I’ll also say, I’m suffering with severe health issues in other aspects such as all over hair loss, extreme pain and extreme exhaustion. Trouble breathing and many hospitalizations. So, to get a bit of relief from the restless legs, I’m grateful for. I’m far from being happy and healthy though.

[Jumpey]

It gladdens my heart that you have found relief.You are lucky to live where you do and can get such help.Do you know what form of iron you received?x

[ALB1Amy in reply to Jumpey]

The iron used, I believe, was called “Venofer”. The key note I’m seeing is that many people aren’t getting it like I did. Typically here, you get 300cc bag, 2 weeks later another 300cc and 2 weeks later 400cc. A total of 1000cc. Due to my allergic type reaction, they had to cut it down and spread it out. I also had it infused at the slowest rated possible. (40 I believe it was. It took from 830am-6:30pm plus several doses of antihistamines, anti nausea and steroid doses.

[Jumpey in reply to ALB1Amy]

Cheers.x

[Muftah36]

That is wonderful for you. Most physicians do not acknowledge the link between ferritin and RLS . I had to take the initiative to take itineraries supplements but my level is still not near ideal and I still suffer , although I have reduced symptoms thru diet and supplements . But I am curious about your iron infusion side effects . Can you elaborate a little on you elaborate a little on those ?

[ALB1Amy in reply to Muftah36]

I have other health issues not real aged to the iron. The side effects occurred during the Infusions only. As soon as the iron entered my blood, I turned bright red, hives, itchy, coughing, wheezing. (That was the first time when they stopped the infusion and treated the allergic reaction which is apparently common. After that I was pre-dosed with Benadryl IV, Gravol, Zantac and a steroid. All IV. I then got more midway through and at the end of the infusion. I was red and itchy through the entire day of the infusions but well worth it for the relief I now have with the RLS.

[cnagy44]

February 13, 2019 I have been taking cataplex F and E2. Unbelievably, it is helping me. Cannot hurt.

[Dilynn58]

I also live in Canada. Toronto actually. Ive had RLS for 40 years and my ferritin levels are extremely low but my doctor only wants me to take iron supplements which have no effect at all. When I let her know I want infusions she refuses claiming there is too high a risk of allergic reactions. You have them and they are controlled so it gives me hope. I’m hoping if I mention this to my doctor perhaps she’ll change her mind. If not I may consider trying to find another doctor. Where in Canada are you?

[bellalurcher]

So pleased for you, I only wish we all had doctors who were so thorough.

[Smiler53]

Great news, always so encouraging for others to read posts like this. Best wishes x