Came back from yet another neurologist and yet another disappointment.
Had my Iron test done before the visit as well as B12, which happens to be 812.
For Iron,
TIBC: 266
Transferrin Sat: 12.78%. Iron :34.
As per Dr B, for ferretin less than 50 and Transferrin less than 45, IV Iron is a good choice. Not according to the neuro I just saw who just said that if Pramipex ain't working take Ropark. When I suggested IV infusion he bluntly rejected that it is too risky and "not needed". I repeat NOT NEEDED. It is freaking unbelievable. Here I am thinking I should probably get a stronger opiod and here they are. Just take another DA. Wrote pregab 75mg because I told him I had been taking that. And he suggested yes take both of them.
Don't know what to do. Its crazy out there.
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Heatherlss
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Oh no. Can you find a haematologist who will perform the infusion? I suggest you by pass the neurologist who thinks it’s ‘safer’ to give you dopamine agonists ( which cause horrendous Augmentation & withdrawal ) than a very safe IV iron infusion. Allergic reactions are extremely rare.
I am stunned that he is ignoring the latest research from Johns Hopkins. Iron infusion helps 50% of RLS sufferers. I always thought neurologists over there in the USA were ahead of the UK but clearly some are still dinosaurs.
I reside in India so don't have anything to say for US doctors. What I have discovered though is that India is definitely way behind the other countries. I would put forward those research papers (I had a stack of them to be honest) but he cut me off saying very gently that" no it's too risky, please take the ropark. It is going to provide you relief".
I'll find a hematologist now. But this is quite draining to be very honest.
Intravenous iron is apparently very safe but there is a risk that you should take action to avoid. The risk is a severe reaction to the infusion. You need to make sure that the people giving you the infusion have the ability to treat this reaction if it occurs.
Note Doctor Buchfuhrer says the following:
"Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. 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."
With you and "rejected again," grrrr. My doctor ignores most of what I say and does not understand or what to do re: augmentation. I need to rotate my prescriptions but need him to write them. He won't. I am changing doctors.
Most recently I have done research saying that a therapeutic diet for inflammation and autoimmune disease will stop RLS. Since I have also read that RLS is both an auto immune disorder and related to a high inflammatory titer I am going to bite the stick and stay on this diet one day at a time.Diet is rather difficult to just plunge into so I am psyching myself up just to start. Will post if have any good results.
My docs have also ignored my pleas and the information I bring them, and refuse to give me an iron infusion. its maddening. For a year now I have been taking oral iron in an atempt to raise my levels. I've gone form a ferritin level of 28.9 to 45, but that is not high enough.
Anyway, I have also been diving into the world of anti inflammatory diets, and can say that I have noticed a difference! Its not been a cure for me as of yet. But it is definitely a step in the right direction. And confirmation that inflammation and food, and gut health plays a role. My RLS is quite a bit less sever than it was a year ago. But I would still like to pursue an iron infusion.
Start you own iron therapy - oral supplementation with Ferrous Bisglycinate Chelate. "Ferrochel® (ferrous bisglycinate) is a patented chelated form of non-haem iron that passes through the stomach and small intestine without breaking apart. It has been shown to be more effectively absorbed than other types of iron chelate in healthy people with different iron levels." Also called gentle iron, mostly made by Albion. It is also available as a patch from PatchMD. Your iron is so low there is little danger of iron overload or other complications. patchmd.com/Iron-Plus-Topic...
I had raging RLS with Ferritin at 49 and % saturation at 20%. I discovered that iron was an issue after reading a home remedy of blackstrap molasses (it contains iron) and taking it immediately cut into the RLS. The Ferrous Bisclycinate I started with was 18mg - daily for a month - then 3x a week - then 1x week. Ferritin went to 108 within 3 months. Patch MD is 45 mg/dose. Here is the one I used, plenty more on amazon. More and more I'm convinced that my lack of iron was and is a gut/brain issue. I haven't taken the iron in about a year - no RLS but still have plenty of sleep issues. vitacost.com/vitacost-chela...
You know, I have been dealing with RL, since 1998, when I let a Dr, put me on drugs!
I never had this RL, until I ran out of the controlled substance,he had me on, and didn't refill it!
I didn't know what happened, I was going crazy,Dr didn't know much about RL, so, I started doing, exactly what they tell you not to do,self medicate!
I still feel like drugs have something in them, that just doesn't come out of our heads or our systems, which big pharma, could easily manipulate!
I have never been able to get rid of RL, but I can control mine,if I don't listen to a Dr.
When I do, I have the worst time ever?
They are doing just what they say, practicing medicine!
They have no clue what you are feeling or how to treat it!
I have OBSA,on top of it all, insomnia!
So I have to do, what works best for me, and I don't ask Drs anymore because they are useless to me when it comes to RL
I'm leagly taking ultram,50mg daily, when I feel like it's starting,then 3 hrs before bed, I take a piece of a 4 mg ropenerol, because that 4 mg dose,given me by a Dr,
Wrong 😑, started having augmentation,and the drug was rebounding on me
I now break it into 1/4, and take it and my 1 mg zanex, I sleep about 4 hrs!
Anything else, I'm up as much as 5 days and nights and I get really mean, not physically but mouth wise , just anxiety, and pain,no sleep and I just don't ask for help anymore 😔, I just take care of me myself and I ain't dead 💀 yet!?
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The outcome of my infusion, and a question
Seeking thoughts on lab results (and my condition in general)
gabapentine queries 
Struggling again 
Ferritin level information
