Hi, first of all sorry for all my mistakes but english is my second language and theres a huge medical and technical terms so treat me gently...🤗
I’m suffered rls since my 13. I’m 48 now. Just 6 months ago i found a doctor who really are an expert on rls. But I don’t find it in my country. I live in Chile and the doctor works in Spain. So he treat me through Skype.
Believe me. He knows and inverigate about rls more than any doctor in the US or UK.
His name is Diego García-Borreguero. Google it and you will found a lot of papers and studies results. Unfortunately for you the most are in Spanish.
Ok, go to my case. I have very very hi iron and ferritin levels on my blood. About 650. So i need lower levels because it’s dangerous. But i made all the exams and I don’t have any issue in my hart and liver.
But with this hi levels of iron i still have a severe rls symptoms.
So, he made me an exam with doctors here in Chile that can measure the iron levels in the Brain. And the result was that i have almost nothing of iron in my brain.
And this is the point that almost every doctor that treat rls don’t know. Is not the iron in the blood, is the capacity of the brain to absorb the iron in the blood. They even don’t know that exist an exam that measure that.
Si now I’m reducing my ferritine levels to lower than normal to get an special iron infusion with some componet that help to be absorbed by the Brain and check about 3 moths later if the iron levels in the Brain are higher.
So that’s it. Ask your doctor or find a good one who really now about rls and the new discovered treatments. And seriously, it could be everywhere in the world.
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Chilandres
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I had high ferritin- 1400, but still restless legs, but Dr Buchfuhrer said it didnt get through to the brain, as you have pointed out. However, he has not suggested any other course of action.
I would be interested to know the name of your brain iron test, and what iron infusion you will get to make the iron available to the brain.
Thank you for your post. It is a very important bit of information.
Yes, it definitely bears repetition that it is the iron in the brain that is important. I wonder if that is the reason some people (looking at you, Madlegs) have a high serum ferritin and yet suffer from rls and also that only 50% of people benefit from raising iron levels. Maybe the other 50% has a more effective blood brain barrier.
Hi, i did not take the iron infusion yet. With my levels of ferritin or iron, I couldn’t put more iron in my body. So now I’m trying to lower the iron levels, and then i could get the iron infusions.
About the iron test I don’t know how to say it in english so I’ll do my best. Maybe i translate it literal. It calls ultrasound transcraneal. Its an ultrasound like the one it’s make to see the babys but in a especific place in the head and is trough the skull and the can see and measure the iron levels in the brain with some especific calculations. I hope i explained my self.
Here is an interview made to my neurologist in the tv news. She work in Chile with the doctors in Spain. The only thing is that all is in spanish so i don’t know if you will Understand. In the page click the video. From the minute 3:40 they talk exactly about the test.
That’s a super explanation. Very accessible. I previously thought that iron in the brain could usually only be measured post mortem. Thank you.
I think Dr. Garcia-Borreguero was involved in the ground breaking research which identified dipyridamole as a possible avenue of treatment. He is a fantastic and out-of-the-box thinker in the rls field. You are certainly fortunate to be treated by him. I hope you manage to reduce your serum ferritin so that you can get the iv iron. It would be fascinating to know how you get on.
Thankyou for posting. Could you explain how the brain iron test is done please? .The closest I have heard of was a fluid sample from the spinal cord via lumbar puncture .
Hi, i paste the answer i made before. I hope answer your questions. If it not, write to me.
Hi, i did not take the iron infusion yet. With my levels of ferritin or iron, I couldn’t put more iron in my body. So now I’m trying to lower the iron levels, and then i could get the iron infusions.
About the iron test I don’t know how to say it in english so I’ll do my best. Maybe i translate it literal. It calls ultrasound transcraneal. Its an ultrasound like the one it’s make to see the babys but in a especific place in the head and is trough the skull and the can see and measure the iron levels in the brain with some especific calculations. I hope i explained my self.
Here is an interview made to my neurologist in the tv news. She work in Chile with the doctors in Spain. The only thing is that all is in spanish so i don’t know if you will Understand. In the page click the video. From the minute 3:40 they talk exactly about the test.
Hi silkyreg, i’m very sorry not answered your question earlier.
Well, i’m taking Pregabaline 300mg 1 hour before go to bed, not necessarily to sleep. I see a movie or 1 or two caps of my favorite series and a can get stay in may bed with no symptoms of rls, and then sleep with no symptoms at all 5 days of the week more or less, i still have bad nights for a few hours and some for all nigh so i go to walk and my stuffs and work on my job .
The thing is, I’m feeling so so well, that i decided to forget my rls for my very firt time in 45 years and take a break on every other treatment and enjoy this period of time. I hope it last forever but we know this is a rarely thing. So i decided to do nothing with my iron levels thanks god.
Last week i went to an internal doctor. I don’t know if it’s called the same way in english but is a doctor who see the big picture of the body system, not an specialist in one area. Maybe you think that is a specialty with doctors less prepared but is all the other way. It’s is doctors who are really well prepared and see how everything of your symptoms of anything are related on your complete body i hope i help you at least a little.
Hi Thank you. This is really significant news. I had an iron infusion in end of November and it raised my ferritin to 343 from about 100. I have been allowing 12 weeks to judge if it helped or not. So far there has been an improvement but its not complete. I had about 10 nights in a row with no RLS at all and I was starting to celebrate but then I had a comparatively bad night so I'm not sure where it's at right now. I think I will price an "iron in brain" test. First I have to find out how to analyze the result. If they tell me 47 or 1234 I wont know if that is good or bad. Perhaps the experts already know that much. All I have to do is find the expert. Holiday in Spain? Probably some smart radiologist can do a transcraneal ultrasound in Australia. Maybe I have to go to a children's hospital?
No I felt that having raised the ferritin to my target I should see what happens. Doctor Buchfuhrer says that if it drops down again there is usually a cause such as an internal blood leak that needs to be found and rectified. I would be surprised if this is happening in my case as I have recently had a test for bowel cancer. I think that is just looking for any stray blood but it might not be relevant. Next ferritin test coming up in February.
Hi, Graham, from what I've read, many of us with RLS experience a drop in ferritin level after IV infusions, and they often cannot find a specific cause, such as internal bleeding. That has been my own experience. It seems that repeated IV infusions are needed for many of us. I'm now 6 weeks out from my 2nd infusion, and it's not yet clear if that has helped. (The first did help significantly, and I've needed about 30% less meds since then. I'll start testing lower doses soon, and see if this helped more.)
Unfortunately, the research on safety and efficacy of repeat infusions is very limited to date. (I did see one paper that reported positive results on a small number of subjects: several of them had their ferritin levels stabilized after several infusions. But that was not considered solid evidence, just suggestive.)
Thanks that gives us hope. I will try another infusion if my ferritin level fades away. Its good to hear that your first infusion showed some promise. Good luck with the second.
Hi all, I wrote this for all of you that participate in this post because a need more than half an hour to write just 5 lines LOL. I really hope this give you more information to you and trying to answer all your questions or give you a way to look at for yourself. I know all of us are constantly searching on the internet about rls but i think because it’s came from other language and from other doctor in spanish speak, maybe you didn’t see until now. For example RLS in spanish is SPI “Sindrome de Piernas Inquietas” but a lot of information about Garcia-Borreguero work and investigation is in english.
So do this: Google “diego garcía-borreguero rls mri iron brain” and you will get a lot of information about the iron brain test an a lot of other very good and latest information. You will get english and spanish results, but if you choose only english results in google preferences you will get only English results. If you could read spanish you could find a lot more information.
Now if you google “diego garcía-borreguero rls” you could find a lot of more information about rls and the treatment and studies. And not only about this especific doctor because you could find a lot of othesr papers and info of doctors who made researchs with Garcia-Borreguero. If you want a lot more information about this and you could read spanish remeber to change RLS to SPI.
I leave for you a few links of a very quick search in google that can show you a lot and very good information that you cand find. And of course you search whatever you whant about Garcia-Borreguero and rls or spi.
This one is a paper with very complete and interesting info. And if you only want to read about the iron test use search tool in document for “mri”
Thank you for all your information! You will get an iron IV infusion soon, right? What do your doctors add to the iron infusion to get the iron into the brain better? Thanks.
Hi again - reading your posts and replies was very interesting - does anyone on here know if there are any UK doctors who specialise and have written papers?? I am going to discuss supplements and my current ferritin level of 59 with my doctor on 1st Feb. Not really sure how to approach this as I don`t want to irritate the Doctor with information he may not have seen. He did put this level down as `normal`. Any help out there please?
Hi, Franklin, you'll see from the paper that Lotte gave you the link for in her reply to you that 59 is too low. Even thought that's in the "normal" range for most people, those of us with RLS need to get our ferritin up to at least 100. And some need to get it even higher, perhaps 300.
Hi Chilandres - I thought that too - but it is getting the information to professionals who are not familiar with the research to understand isn`t it. The GP nurse I saw was looking at NICE web page - a UK based information place for them. Thank you for your reply.
Hi vikkkk, here is the link to the “Instituto del sueño” in Madrid. García-Borreguero work there. You can reserve an hour to an online consult i think. I hope it helps you.
Wow!! This is amazing. Thank you so much. Every doc I go to says the blood matches the brain.... It is so rare to hear of a doc who will agree to test it separately. For the past 30 years I have asked for lumbar puncture or MRI to see if my brain iron is different than my blood but they will not order the tests because it's not "the standard of care" I would love to reach out to your guy in Spain. Thank you so much for sharing your story.
I have news from Google Bard about the United Kingdom:
(seemingly seeing my doctor next week about it)...
The standard UK medicinal treatment for RLS is a class of drugs called non-ergot dopamine agonists (NEDAs). These drugs work by increasing the levels of dopamine in the brain, which helps to relieve the urge to move the legs. The most common NEDAs used to treat RLS are pramipexole, ropinirole, and rotigotine.
NEDAs are generally well-tolerated, but they can cause some side effects, such as nausea, dizziness, and fatigue. It is important to start with a low dose of NEDAs and increase the dose gradually to minimize side effects.
Yeah fair enough I caught it out in our first conversation. But it was about 6 hours of typing. It's good 'so far' friend. I hope you get some sleep just saying (as someone untreated for RLS for whatever crappy doctor related reason, I did ask, wish me luck next week).
Good luck with your health. Bard is helping me quit alcohol, for example, by recording my input and unit consumption here in London.
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Blood test (Iron) results - likely the cause of my RLS?!
total iron blood work
Role of Dopamine and Brain Iron stores
Good iron levels for the four blood tests relevant to RLS?
How reliably does NHS retest Blood iron levels after IV Iron?
