Nice to find you. I have had RLS for forty five yrs

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JustKeepWalking82
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Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

It is odd what people do especially when they are supposed to help people. I am glad that you did what you had to do in order to get out of a horrible situation like that. I feel horrible that you did not have someone there to speak up for you and to help you out. We have to do what is best for ourselves in the long run.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
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Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

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ViewsAskew
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Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

rthom, did anyone ever figure out what was wrong? It sounds a lot like some form of autism or a sensory integration disorder or sensory processing disorder. This could have a lot to do with your difficulties today in finding medications that work. There might be something else that is in the mix that is affecting all of this.
Ann - Take what you need, leave the rest

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rthom
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Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

no, it wasn't figured out. My parents didn't believe in dr's (I cam within 30min from dying because of it--saved myself when I was 12--walked clear across the sity to the hospital and survived--and they worked with child protective services--go figure) so I didn't see them and when I was on my own it just hasn't been anything that they felt could be tested for, (apparently that stuff needs to be tested in childhood).

Polar Bear
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

It has been a difficult journey for you in general and a bit tough that WED threw itself into the mix.
Betty
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badnights
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Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

There are people who specialize in diagnosing learning disorders in adults, so probably there are those who can and will diagnose sensory disorders in adults?
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ViewsAskew
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Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

badnights wrote:There are people who specialize in diagnosing learning disorders in adults, so probably there are those who can and will diagnose sensory disorders in adults?


I'd think so, too. You might have to search, but I honestly think that figuring this out might help with everything. There might even be some physical characteristics, such as responding to medications differently, that could not only be explained, but might have a solution or workaround.
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.

JustKeepWalking82
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Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

I was diagnosed at my daycare. It was across the street from my parents' work and they took in the children of the people who worked nearby. The staff comprised of physical therapists, speech therapists, and others in the therapy area. I had to go there anyway because I was really weak in my upper body (I was born 5 weeks premature, but I don't know if that was the reason or not). They had an IWRP (Individual Written Rehab Plan) drawn up for me that they discussed with my parents after evaluating me and that is when my parents found out about mine. That's horrible, rthom! Oh, and you're welcome! Ann, I don't know if it is connected but I honestly wouldn't be surprised. Although, the sensory defensiveness could also be a prelude to my unknown condition. rthom, I would still get it checked out because it couldn't make it any worse and you would at least know what you are up against; in our journeys with WED more knowledge couldn't hurt.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
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Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

I have no problem with getting it checked out, but a couple of years ago my wife read about Autism/Asperger's and came to me all excited as she had thought she figured me out (told me I had it likely), anyway I asked my GP about it and was told I did not have it and testing for it was not done in adulthood. So this is the reason I sound like I'm not interested in checking it out now. It's not that I won't it's that I don't know where/how. Also money is a problem so it needs to be very cheep or free. I would like to know though because the last time I saw my GP I was told to get 2 books on it because these books would be really helpful to me in dealing with people and their responses. But the dr. wasn't saying I had it, just I had similar attributes as someone with it. (however she had no idea of the names of the books or authors--gee thanks for that--lolol) Anyway if anyone has read great books on the subject I'd appreciate a heads up.

rthom
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Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

ViewsAskew wrote:
badnights wrote:There are people who specialize in diagnosing learning disorders in adults, so probably there are those who can and will diagnose sensory disorders in adults?


I'd think so, too. You might have to search, but I honestly think that figuring this out might help with everything. There might even be some physical characteristics, such as responding to medications differently, that could not only be explained, but might have a solution or workaround.



Ann is there some things in particular you are thinking about in particular that doesn't fit the RLS?

ViewsAskew
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Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

rthom wrote:
ViewsAskew wrote:
badnights wrote:There are people who specialize in diagnosing learning disorders in adults, so probably there are those who can and will diagnose sensory disorders in adults?


I'd think so, too. You might have to search, but I honestly think that figuring this out might help with everything. There might even be some physical characteristics, such as responding to medications differently, that could not only be explained, but might have a solution or workaround.



Ann is there some things in particular you are thinking about in particular that doesn't fit the RLS?


Not specifically - just that it's been so hard for you and that you never get good relief. I have to wonder if there is something else that's in the way or contributing that you aren't aware of.

Out of curiousity, have you ever gone gluten-free, rthom? It's highly recommended for people with autism, sensory processing disorder, schizophrenics, and others who have conditions associated with the brain. They now belief that the number 1 presenting issue of celiacs is neurological. They don't know nearly enough, yet, about people with non-celiac gluten intolerance, but these people test negative for celiac, yet have definite problems eating it.
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.

JustKeepWalking82
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Location: Pensacola, FL

Re: Nice to find you. I have had RLS for forty five yrs

Post by JustKeepWalking82 »

rthom, for books I would suggest The Out-of-Sync Child by Carol Stock Kranowitz. I did a quick search and hers seems to be the best/most reputable of the books concerning sensory defensiveness and sensory disorders. Also, since you still have the characteristics of someone with sensory defensiveness (because you never went to classes to get accustomed or integrated) you should not have too much trouble getting your concerns validated. I will ask my mom to see if I can point you in the right direction in regards to finding a doctor/inexpensive way to finally give you a diagnosis.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

rthom
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Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

thanks

jul2873
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Re: Nice to find you. I have had RLS for forty five yrs

Post by jul2873 »

My daughter had years of stomach aches, different kinds of pain, fatigue etc. She was diagnosed with various things, one being fibromyalgia. Then about two years ago her doctor suggested she stop eating dairy and gluten for a couple of weeks and see if that helped. Oh my heavens. I asked her when she started feeling better, and she said, "The next day." She is in great health now, jogs 3 miles a day etc.

So you don't always need expensive tests. For her, the relief was immediate and dramatic when she just stopped eating those ingredients. And the suffering she experiences when she eats those ingredients (an ice cream that was mistakenly listed as dairy-free) is also immediate and dramatic.

Chipmunk
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Chipmunk »

Temple Grandin has some great books - she has autism and does a good job of explaining her sensory issues and those of others with autism.

Here's a site with some good information about it: http://www.spdfoundation.net/about-sensory-processing-disorder.html and here's the "library" of information on Sensory Processing Disorder: http://www.spdfoundation.net/library.html.
Tracy

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