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Postby JenniferF » Thu Sep 17, 2009 7:13 am

71jules wrote:
I can't get help, no medicine, no help of any sort


Not so. Don't let your doctors write you off like that. Even though they don't know the cause of your symptoms, they *can* refer you for physical therapy, speech therapy, occupational therapy, etc., to help you hold onto and build up as much function as possible.

Also, you can plug into the whole world of adaptive sports, so that you find new activities to fill any gaps where you've had to move on from something that you used to enjoy in the past. Here's a nice little ataxia blog just to get your brain going about some possibilities: http://baliwhat.wordpress.com/ . (Her situation isn't yours . . . but reading around what other people with this or that disability have done is helpful for exploring the possibilities.)

And, you can explore what possible medical treatments are out there to generally keep you healthy, help with the symptoms you have, and address possible causes in a low-side-effect way.

-Ie, if you should develop a symptom like a tremor or insomnia or urinary tract problems, your doc should help you explore what options you have, and do some trial-and-error to see what works. (Which is exactly what they'd do if you had MS - trial and error -- see if this tremor drug works . . . no? try this one then . . .).

-Likewise, things like Vitamin D intake, you can go ahead and do -- if you have MS, it is likely to help; if you don't, as long as you are taking a safe amount, nothing lost. [See http://www.neurologyreviews.com/09July/C1vitaminD.html - cutting the relapse rate in half? That's not bad for a low-side-effect, OTC treatment, eh?] Curiously, a lot of the same supplements and dietary measures helpful for neurological conditions are also good for heart health, menopause symptoms, etc. OTC treatment isn't "nothing", it is actually found to have documented effect on serious medical conditions.

***

Don't let them give up on you. Keep looking until you find a doc who will help you research options to deal with your day-to-day problems, and write prescriptions and referrals for any treatments you want to try.

(And all the trial and error will only help with eventually getting a firm diagnosis down the road, as you discover what your body does and does not respond to.)

***

Sorry for the lecture. But lack of diagnosis is no excuse for refusing treatment. Nonsense nonsense nonsense. You're bold (I'm cheering for you telling your evil neuro where to go), you can do this.

Jen.
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Postby 71jules » Thu Sep 17, 2009 5:12 pm

:lol: Thank you so so much Jen for the support, hope and the laugh you gave me at the end of this post.
You have lifted my spirits and I will be on the phone today to get back straight away and get more answers as to what she can do for me because it isn't good enough is it? :x
Thank you so sosooooo much again. :wink:
Hope to be in contact again soon.
Jules
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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Postby JenniferF » Thu Sep 17, 2009 5:22 pm

Good luck with it!
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Postby 71jules » Thu Sep 17, 2009 5:22 pm

:wink: Thank you NHE for the input on the acne I will pass it on to our poor 15 year old son who suffering severe acne.
Appreciate it.
Jules
xo
Hugs to every single one of you I have and will meet on this site. Whether I end up with a diagnosis or not it will have been a pleasure knowing you all via this site. Take care now and forever. :) <3
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