Guest guest Posted November 20, 1998 Report Share Posted November 20, 1998 Dear group, Don't know if I'm overstepping my boundries, Today I sent this email to the National Institute of Neurological Disorders and Stroke Research, I received this answer shortly after I sent it. Thank you for your insightful email. I will convey your message to such a researcher in our Institute. Sato, M.D. At 04:02 PM 11/20/98 -0500, you wrote: >To whom it may concern, > >My name is June Wharton from Laurel, Delaware. I'm 65 years old, Only in >the past 8 years did I know my problem had a name. " Restless Leg >Syndrome " . Unfortunately there is not enough research done on it because >it is not well known, however many many people have it and don't know it >has a name. I've had it almost all my life. As a child I would pound on >my legs and couldn't sit still, and was told it was growing pains. It >doesn't become bothersome until you are older, so it's possible the >children that are diagnosed with Attention Deficit Disorder, or just Hyper may >have this disease. Eight or ten years ago My RLS reached the point that I >knew something had to be done. If I were confined to a wheel chair and >couldn't walk or move. I would rather be paralyzed from the neck down. At >least then I wouldn't feel the sensations. These sensations are creeping >crawling vibrations that make you HAVE to move. They come in waves, and >if you can't move, you shudder and kick out and move involuntary. They >only affect you when you try to sit still, relax, read or lay down to >sleep. Walking is the only thing that will make it go away temporarily. >Sleep, more than an hour or so at a time is impossible, so we walk in the >night and find it hard to function during the day. Sometimes you're soo >miserable you think you'll go crazy if you can't relax & get some quality >sleep. > >I recently joined an online support group, through the Restless Leg >Foundation. Reading through some of the letters, I noticed something I'd >never even given a thought to before. It seems most of us have other same >problems that just may have a connection with RLS. Neck & shoulder pain, >lower back pain, knee problems Ligaments tightening in back of legs, >arthritis, and even depression. > >We have a Dr. Levin is our support group that also has RLS. He has >been very helpful to us. When I mentioned this to him and all the others, >He said I may well be on to something. That is why I am writing this >letter to whom I am hoping and praying can let the research department >know. > >By the way, Most Neurologist have never heard of RLS. We've been ignored >too long. Please give this some consideration. What you may come up with >could cure many other illness along with RLS. > Thank you, > June K. Wharton > 9 Nero Lane > Laurel, De. 19956 > > jwharton@... > Susumu Sato, M.D. Chief, EEG Section, OCD, NINDS Bldg. 10, Room 5C101, MSC-1404 Bethesda, land 20892-1404 Tel: Fax: email: sato@... Well gang, do you think I've overstepped? Or are you justlaughing at me. June 65, Delaware Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 1998 Report Share Posted November 24, 1998 June, I think you have said your piece very well. You have asked questions and raised concerns plus stated what most of us are going through at one level or another. We have all tried at one time find answers to this insane monster that has taken up residence in our bodies, groping almost blindly for any thing that will help stop, just stop the unbearable sensations that accompany rls in its many forms from mild to the full gambit of symptoms. Some have tried treating it with the natural approach while others will and do try any drug legal or illegal...it is indeed a hedious situation that seems to have no end to it. I have found that the only thing I can count on for sure is that with this disease " nothings for sure " . No complete cure, no controlling it completely for any length of time, no rhyme or reason as to its cause nor any answers to as what course it will take next. It gives no warning as to when it will manifest itself nor how long the eppisodes will last. But, the worst of my night mares is that it is progressive so I can count one having this the rest of my life and that it will progress from one bewildering stage to another, each getting more complex and each gaing momentum. No I don't think you have over stepped your boundries because rls has no boundries to cross. It just is, period. I hope for all our sakes some day there will be some form of answer for us whether it be its cause or its control or willingly its cure. Now we can be thankful that we have this wonder support group even though we seem divided at times on just about everything we are an existing group of people who share a calamity that has formed a fourse that standing alone demands an answer. Remarkably we are a determined bunch and will not rest until the dust has settled from the battle and the war is won!!! I cling to that outcome, that one day we will be able to lead a life that is a joy to live rather than this uncertain roller coaster ride though time causing each of us a life deprived of all it could and should be! Pray for that outcome...we are going to need a maricle. Keep us posted if you hear back from Dr. Sato, I know he and all the people who are connected to the research of rls consider it a concern of great magnitude both mentaly and physically and therefore I am trusting they are doing their utmost to help us. In the mean time may God be with us. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 1998 Report Share Posted November 25, 1998 Dear Lee, Thanks for the encouragement, I do believe they will come up with a cure during your lifetime. Mine, I'm not so sure about, I'm already 65, but I will pray, and fight to the finish. And if I can find anyone else that might help if I write to, I will. Do you get the newsletter, " Night s " ? I just got my first copy yesterday, and they have some articles that sound like they are getting closer and closer to the answers. Haven't finished reading it, but I'm encouraged. The first article I read was on Research at the National Institutes of Health, and they say there is evidence to suspect that spinal mechanisms might be involved. At least they're looking into it. Well, keep on keeping on . June 65, De ---------- > From: LINDA5222@... > To: jwharton@...; rlssupport (AT) onelist (DOT) com > Subject: Re: Digging deeper > Date: Wednesday, November 25, 1998 2:35 AM > > June, > I think you have said your piece very well. You have asked questions and > raised concerns plus stated what most of us are going through at one level or > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 1998 Report Share Posted November 25, 1998 June, I also thoght alot on the article about the spinal research going on. I think this is one good direction to look into. I also showed the article to my Doc & agreed that was a good idea, he also is a researcher besides his other responsabilities as a director of adolecents at Western Psyc Hospital. He is glad when I bring additional info I find on internet to help us both make proper treatment decisions. Quote Link to comment Share on other sites More sharing options...
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