History and questions

[plshelpme]

I am new to the Discussion Board but I too have suffered with RLS for approx. 30yrs. My maternal grandmother suffered from it as did all my aunts (4) and my mother who is now 85. I do believe there is a genetic component. Back then they all had their own names for it but it was RLS.

My issues are that my gp knows very little about this and I am trying to educate him by copying your articles and highlighting information. His wife suffers from it so he was the first gp that really acknowledge this was not in my head.

I have been on Mirapex, Requip, (insurance will only paly for generic) so pramipexole oral for 15 yrs and just recently changed to ropinerole. After years of use I began to have really bad side effects with pramipexole in which I would completely fall asleep during conversations, driving, etc. I went to my gp and asked to be switched. He then placed me on ropinerole. Getting off the pram was torture. I had a lot of issues tweaking dosage of rop and I am having more daytime events and limb and hand effects.

I am so glad that I found this resource to ask questions and realize I am not the only one suffering with this DISEASE!

[Polar Bear]

This is really such a cantankerous disease, just will not behave itself !!
If you changed from pramipexole to ropinerole does your GP know that it takes about 2 or 3 times ropinerole to equal the pramipexole dosage.

Copying articles and highlighting is excellent to show your doctor.
However, this book is wonderful, 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.

Please consider reading up on augmentation, this is quite common following taking pramipexole and ropinerole. This is when the disease is actually made worse by the medication.

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.

[plshelpme]

Thanks, I will check with him as I did have my level checked but I can't remember what the number was. I know that I was increased to a higher dosage on the rop. and that it does not seem to be enough on some days. I can get by with one dose at 5p and one at bedtime but sometimes I start to get the "heebeejeebies" {as my husband calls it} around 1P at work. I do a lot of sitting in my office and in the courtroom so I contribute it to that.

Also thanks for the info on the book. I will order it today.

I can not believe there is not a support group for RLS in the Houston area, where I live.

[Polar Bear]

Most of us are in the same position.
Support groups are run by volunteers and take a vast commitment.
I consider this Discussion Board to be my support group and am so glad that I found it.

[Rustsmith]

I also live in the Houston area. I have not followed up on it yet, but I saw a flyer at my "former" doctor's office last month for an RLS support group in town. I will send you a PM with the contact info since I do not want to put the lady's name and phone number up on the bb.

[ViewsAskew]

There is an excellent doctor in the Houston area if you decide to switch. His name is Dr Ondo and he is a neurologist. He really would be a great doc when you have tried many things and aren't sure what to do next.