Hi
I am 67 and started with RLS in April last year. I have had a nuclear brain scan and an MRI and my neurologist has concluded I have severe RLS. I live in Southampton UK. I currently take clonazepam and use a !mg Neupro patch. I have joined to learn as much as I can from other people who have suffered with this longer than me and hopefully gain more undersatanding
Just joined
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Re: Just joined
Martino, welcome to the discussion board and congratulations on finding a neurologist who was able to diagnose your RLS. Some of us have not been as lucky.
You should find quite a number of things that are of interest to you in the Prescription meds forum and in the General Topics forum.
You should find quite a number of things that are of interest to you in the Prescription meds forum and in the General Topics forum.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Re: Just joined
Welcome Martino - another great source of information is this book, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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Re: Just joined
I'll add my welcome to the chorus.
It's not unheard of for it to get severe quickly - not sure how common it is, either. I'd definitely follow Polar Bear's advice and make sure you get your serum ferritin and your hemoglobin tested. Anything that causes anemia can cause RLS/WED, and many of us find we have low serum ferritin. If anemic, RLS/WED almost always improves when you are no longer anemic and if often improves if the serum ferritin is increased.
It isn't a cure by any means - nor does it work for everyone. But, it's always worth a try. And, it's particularly important when using a dopamine agonist, such as Neupro, because the higher the ferritin level, the lower your chance for augmentation (where the medication actually worsens the condition).
It's not unheard of for it to get severe quickly - not sure how common it is, either. I'd definitely follow Polar Bear's advice and make sure you get your serum ferritin and your hemoglobin tested. Anything that causes anemia can cause RLS/WED, and many of us find we have low serum ferritin. If anemic, RLS/WED almost always improves when you are no longer anemic and if often improves if the serum ferritin is increased.
It isn't a cure by any means - nor does it work for everyone. But, it's always worth a try. And, it's particularly important when using a dopamine agonist, such as Neupro, because the higher the ferritin level, the lower your chance for augmentation (where the medication actually worsens the condition).
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.