New Member - MHochner24

[MHochner24]

Hi! Thank you so much for welcoming me to this member board. Still to this day, I don't comprehend how could I end up having RLS after all my bloodwork results came back normal including a good iron level, good ferritin level, etc. I am an adoptee and found out I was adopted about ten years ago. Lucky enough, I met my biological mother twice before she passed away. She told me all about her medical records. None of her medical records are RLS related. My biological father is Steven Davis who I have not met yet. My two biological sisters Lauren Silverman who is in relationship with TV actor, Simon Cowell and Nicole Davis - I contacted their mother Carole Saland for their medical history. They are all perfectly healthy and NO RLS. I am puzzled why why why am I only one in the family that has RLS. The only symptom I have is the horrible horrible creepy crawlies sensation in my both legs which happen at bedtime only. I honestly cannot describe what sensations I feel in my legs. I hope RLS is the proper diagnosis that was given by my neurologist and Dr Buchfuhrer in California where I live. I have never experienced any twitching or jerking in my legs at all. I do not need the urge to move. What I notice is that if I need to urinate at bedtime, the creepy crawlies would show up in my legs until I get up to urinate and the creepy crawlies would be gone. Go back to sleep and repeat over and over again if I need to urinate while I sleep. I was put on 450 MG of Lyrica and it helps me sleep for good 6 hours for two weeks straight which was the best of my life after I was given a diagnosis for RLS. After two weeks, I cannot sleep good because creepy crawlies just come up in my legs as I think augmentation is the reason even though I was only on the new medication just just for two weeks! I am deeply disappointed that the medication does not help for many upcoming months or years. I feel like I need to have further tests as to find out why because of the fact my ferritin levels and iron levels look good. There has to be a reason why I have RLS??? I am also trying to learn if any food can help improve less severe creepy crawlies. I hope one of you are able to help me understand my case a lot better. I know everyone is different. I also struggle to understand why we haven't found a cure yet. I am also upset that I have issues with my brain all over again because I had vertigo attacks when I was 3 for 15 years. It just stopped and I was super thrilled that my brain was finally normal until I have RLS. I was like what???? Why do I have to deal with RLS that comes from my brain again? It's eerily weird that it happens to me again that is from my brain.

[ViewsAskew]

Welcome. So sorry to hear of all of your issues.

Others have mentioned urination, also. And, more than one of us has found we needed to increase the dosage of Lyrica (or others in the same class) after a few weeks. Make sure you call Dr. Buchfuhrer and let him know that the dosage is not working.

[stjohnh]

Hi MHochner24. Welcome, and I'm sorry you are having problems.

I'm sure you have RLS if your neurologist and Dr Buchfuhrer say you do, Dr. B is one of the world authorities on RLS. As far as additional tests, there is no test for RLS, the diagnosis is made on the basis of your symptoms and examination.

Why do you have RLS when others in your family don't? The answer is unknown. Lots of people have RLS without a family history. The answer probabaly is: RLS is associated with approximately 20 genes. Your mother and father could easily have several of the genes but not individually have the "right" combination to produce RLS symptoms in either of them. However, when you were conceived, the genes redistribute themselves (1/2 from mom, 1/2 from dad), and you ended up with a combination that causes RLS symptoms.

As far as a cure goes, RLS is primarily a genetic disease, and most currently have no cures. Diabetes has been known for hundreds of years, yet there is no cure for it. High blood pressure has been understood for decades, yet no cure. And so forth. In actual fact, except for infectious diseases, medical science has not provided cures for most of mankind's ailments. We have treatments, yes. Cures, mostly not.

Augmentation does not occur with Lyrica, so you don't have that.

There are lots of people who get partial relief with Lyrica, but not at a satisfactory level. You may need a higher dose or an additional medicine added to the Lyrica. Talk to your doc.

The iron tests, ferritin, etc., tell only about the iron level in your blood, not your brain. You have low iron in your brain, even though your blood has enough. This is very common for people with RLS. BID (Brain Iron Deficiency) is the basic problem causing your RLS. There is no test for BID.

[MHochner24]

Hi Thank you so much for the long note and I sincerely appreciate it so much! I am still on 450 mg of Lyrica and it helps me sleep for good 5-6 hours since July 2021 and I wake up with creepy crawlies in my legs when I need to urinate. I will see Dr Buchfuhrer for a follow up appointment on January 4th.

How could I get enough iron in my brain to help relieve RLS ? By the way, I have some numbness and tingles in my feet and hands. I am not sure if it is RLS related issue or a separate medical issue? Have you guys ever experienced having some numbness or tingles in feet and hands ? I am worried about that. I have never had that symptoms since I started having RLS four years ago. I plan to share that with my doctor when I see him in January.

[stjohnh]

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions.

Ask Dr. B about iron when you see him. Numbness and tingling of the hands and feet are not a usual part of RLS. More likely you have some type of peripheral neuropathy, not related to RLS.

[Polar Bear]

I have numbness and burning only feet and legs... Peripheral neuropathy. I'd have thought your lyrica would have helped this.

[MHochner24]

Thank you for the replies. My ferritin level is very good. My iron level is very good. No idea why I have RLS even though my ferritin and iron level are in normal range. Only creepy crawlies sensation in my legs that will happen when I need to urinate at bedtime. Probably once or twice during bedtime after taking Lyrcia medication. I never have any jerking or twitching. I will ask Dr B when I see him on January 4th about iron.