Hi all my fellow friends. I have posted something like this before, now will be more direct . RLS is very very common. Apparently the etiology (the cause) is not understood as there have been so many scientific studies stating this is the absolute etiology. So to for starts, lets elevate this disease by calling it by the correct name:
Willis-Eikbon Disease (WED). Don't referrer to your moving arms and legs as 'restless', use the word 'seizures'. People can not relate to 'restless' but take notice to the word 'seizures.' Unless you have a doctor with the same debilitating WED as you do, most likely will just be on a pill quest for you. Be your own best advocate and best researcher. If you find something such as coffee in the middle of the night actually helps some people, which has been stated on this site several times, print it out and take it or send it to your doctor. If possible, have someone else with you when you visit your doctor. Also, every time you visit the doctor, ask for printed out notes of that visit. Read them and make sure they are accurate. If not, have the doctor be accountable and have them corrected. I have done than more times than I can remember. In the last three years I augmented so badly, I really did think I was going to die. Not to bore you and not sure why, something changed. I am back on a very low dose of requip and have very few but minor episodes of leg seizures. When that happens I do all the non medical things that I know help me. Bottom line:
1. We are on this site talking and seeking because we have Willis-Eikbon Disease.
2. We have leg and/or arm seizures
3. We do our own research and take copies to the doctor
4. Eat the best diet you can and keep your body healthy as possible, no sugar.
5. Visit doctors with an advocate
6. Get written copies of all visits and review and correct if needed.
7. Save everything in a notebook, your research, your doctor's notes, what works, what doesn't
8. No one has reach their "hail Mary" no matter what the doctor says. We are still here, so DON'T GIVE UP.
9. DO NOT GIVE UP...there are too many of us with this same disease and there is a reason, even though not obvious yet. Actually may be more than one.
10. Lastly, don't be reluctant to try alternative treatments and natural remedies.
11. Thank you