Not sure if this is RLS or not

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capot1948
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Joined: Tue Jan 16, 2018 4:31 pm
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Re: Not sure if this is RLS or not

Postby capot1948 » Sat Jan 27, 2018 9:39 pm

Hi Ann, I didn't know about not providing prior tests. So I shouldn't take my MRI/CT scan results to UTMB with me or should I? I can see not taking prior diagnosis to a doctor, let them make their own decision. I also can see leaving a doctor who gives up, I tried that at the VA I go to and they refuse to assign a new one to me. All that happens now when I go for an appointment with him is we sit and talk for about 20 or 30mins about how messed up I am and I leave. I'm hoping I can get somewhere with my next two appointments especially the VA. If something is found that can be related to Agent Orange exposure during my time in Vietnam I'd be able to file a claim for more disability.

I've been researching Orthostatic Myoclonus as well as Orthostatic Tremor without much success. The movement specialist I saw in Georgetown, Tx also mentioned Abnormal Involuntary Movement.

ViewsAskew
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Re: Not sure if this is RLS or not

Postby ViewsAskew » Mon Jan 29, 2018 6:11 am

If it were me, I think I'd go in with nothing and see what the doc asks for and does. If he asks for those same tests, you can then say, "Great, I have the results for you. Will get them to you." If he doesn't or asks for other tests, maybe he is looking at it in a new way. What I wouldn't give him - especially not to start - is any written conclusions from medical personnel. But, that is me, lol!

I once had a doc - in the early HMO days - who refused to give me a referral. It took about ten visits - every other week or so - for her to finally ask what she had to do to get me to stop coming. I told her all I ever wanted was a referral. She gave it and the person she referred me to solved it in one visit. Yeesh.
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.

capot1948
Posts: 10
Joined: Tue Jan 16, 2018 4:31 pm
Contact:

Re: Not sure if this is RLS or not

Postby capot1948 » Mon Jan 29, 2018 3:39 pm

Good idea, I'll have my scans with me but hold off at the VA in giving them. At least the VA doctor will have all my records ahead of time since they're all electronic now. The neurologist at my UTMB appointment is a different matter. I'll make sure to have everything with me for when she asks but won't provide anything until she does. Hopefully I'll have some kind of a diagnosis from one or the other. Regarding getting referrals, my VA Neurologist that has given up on me keeps saying he doesn't know what a referral to another neurologist will do that he hasn't done. However he changes his tune whenever I contact the Patient Advocate at the VA or my Congressman as I've done twice already on him.

ViewsAskew
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Re: Not sure if this is RLS or not

Postby ViewsAskew » Mon Jan 29, 2018 9:42 pm

Good heavens - what a system we have.

I remember a situation a friend of mine was in; she couldn't get a referral as the doctor said basically what yours said. She realized during one of her appointments that the doctor simply never wanted to see her again. So, she said, "If I agree to change to see another doctor instead of you, will you give me the referral?" The doctor said, "You promise never to see me again, right?" My friend agreed and he signed the referral.

And, of course, the new doc figured out her issue immediately.

I can imagine that the VA is even worse. Both mad and sad regarding how that must affect you. I am going to stop typing now before I write something I will regret!
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.

capot1948
Posts: 10
Joined: Tue Jan 16, 2018 4:31 pm
Contact:

Re: Not sure if this is RLS or not

Postby capot1948 » Mon Jan 29, 2018 10:00 pm

The VA is a system that has long been broken and even though some have tried there is just no fix in sight. You should read some of the comments posted in the several veteran Facebook groups I'm in. For instance when I came back from my failed appointment at the Baylor College of Medicine in Houston (that's the one where the 'professor' I saw said I drank too much 50yrs ago) I asked my VA Neurologist for an appointment to the VA PADRECC in Houston:

"Dr. Moss, I went to my appointment last Thursday at Baylor College of Medicine in Houston. It was absolutely worthless! The doctor I saw said that my problem could be caused by the fact that between 45 and 50 years ago I drank a lot of beer. What a load of crap! Here is a link to a video my wife shot last month the episode actually lasted about 7 minutes or so but I had to get her to get my tablet to make the recording so she only captured what you see. Still, it shows very well what's going on and as you can see it lasted more than a few seconds and is continuing to worsen as time goes on. Needless to say I'm really getting depressed because not one single doctor I've seen so far is any help on what's going on. She said that the beer drinking messed with my Cerebellum! What the hell do I do now???"

NOTE-I deleted the video link as I've posted it here before. His reply was:

"I am sorry to say that I do not know of a next step. I have exhausted the resources available to me through the VA system. I am not able to send you from one Neurologist to the next. I do not know of additional testing which might be done regarding your situation and I have been hoping that referral to movement disorder specialists would lead to new avenues for diagnostic testing or therapeutic options. This has not been the case."

Which to me reads, well, nothing more I can do, period. So I replied with:

"Forget it Dr. Moss, I'll contact the patient advocate, apparently you didn't read what I said about an interfacility referral"

I called the Patient Advocate the next morning and amazingly he'd put in the referral to Houston already. He got smart with me and said I was wrong about him not reading what I'd written about a referral to the PADRECC. When someone says "I am sorry to say that I do not know of a next step. I have exhausted the resources available to me through the VA system" that tells me you're not going to do anything else for me.

I'd also better stop here before I get carried away :)


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