Any help please

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ltr

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Can someone tell me how I can get my doctor to help me? I have repeatedly told him I can barely leave the house because of weakness and fatigue. When I go to see him I feel like he is doing me a favor. I am completely alone with three kids and no one is listening. I am still able to take them to school in the morning and pick them back up, tinker around picking up the house, but that's about it. I am low-income because I quit my job to go back to school. I had big plans. Now I have state insurance and no help. Shouldn't he help me with care? I don't know what to do. Last week he told me he doesn't know what I have, "but whatever it is, the outcome doesn't look good". Then he sent me on my way without a follow-up visit being scheduled. I wonder if I am doing something wrong, the way I talk or look or something. How can nobody care?

Also, when and if I lose function in my arms (they are getting weaker), are there still ways for me to use the computer. I would like to at least finish my degree and it ends this semester (my last two classes are on-line thank goodness).

Thanks for anything to offer me. I know someone did mention the MDA and I will try that.

Leslie
 

CindyM

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Hi Leslie-sometimes I suspect the docs are as stumped as the rest of us. But you have a couple of things in your favor, the first being that you (perhaps by way of your insurance) pay him so he is basically in your employ. Another thing you have in your favor is that you only have to look out for yourself - he probably has a hundred or more patients to remember.

With that in mind, never feel shy about asking him to do what you want. As you become informed about the various tests and medications, don't hesitate to take control of the conversation and ask when, where, what and why. And if you don't like the answers, you can always hire another doctor! Everyone here recommends starting with a neurologist. Cindy
 

ltr

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Thanks for answering my post. There is only one neurologist in town and his nurse practitioner sees all the patients. She decided I didn't need to come back. I have asked the ins. co. for a second opinion, but the only other neurologists are two hours away. I sure hope I can still drive by the time I get the approval and the appointment. I can't believe it took such illness for me to realize what people go through to get some help.
 

liz

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Hi Leslie --

There are voice recognition computer software programs which will help you to type by dictating. A couple of folks who visit this forum are pretty adept at using them. I'm currently learning how to use Dragon 9. If you are determined to be disabled, VESID (that's the New York State Vocational and Educational Services for Individuals with Disabilities) may help you pay for the program. It sounds like you're already computer proficient, so that may be the thing to help you continue your writing career.

Liz
 

ltr

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Thanks Liz, I want to learn as much as I can before crap happens. I am glad I found this site and am thankful for everybody who is willing to educate me and listen.

I saw a rheumatologist today who is sending me to PT. She said she hopes I can get the neurology appt. that I am waiting for. Please pray that I will be able to go to Upstate and see a neurologist. Thanks!
 
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