Autonomic nervous system disorder: No diagnosis or help yet

Posted by joannemm34293 @joannemm30809, Sep 14, 2021

Two years ago I started having what appears to be possible autonomic nervous system malfunction. It started out with pins and needles and numbness in all of my extremities, visual disturbances, bowel disturbances, even paralysis of parts of my body would just go dead numb. What is worse is that these episodes come on out of nowhere and they have progressed to where I suffer almost every day now. The worst part of these episodes are that my spatial awareness, the way I feel sensory wise is totally off. So far no doctor has been able to figure out what's wrong with me from a neurologist to endocrinologist to cardiologist. I even have tachycardia many times during these events and from head to toe I feel absolutely sick head to toe. I am at my wit's end I need to find some doctor that knows what's going on and if this is disorder know me or an autonomic nervous system malfunction I need help. I just cannot believe in the United States of America that so many different doctors I've seen over 2 years with dozens upon dozens of tests and blood workup and no one can figure this out.

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I am in a similar position here in Tampa., FL. Have you found any help since this post?

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@sashasamantha

I am in a similar position here in Tampa., FL. Have you found any help since this post?

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nothing really to date, how do I monitor my outpouching size on a regular basis? My united healthcare community plan basically rejects most requests let alone MRA's on a regular basis for monitoring purposes. I'm the last of my biological family, both parents and two brothers died from heart/stroke issues which has me on alert.

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@hendglenn2000

nothing really to date, how do I monitor my outpouching size on a regular basis? My united healthcare community plan basically rejects most requests let alone MRA's on a regular basis for monitoring purposes. I'm the last of my biological family, both parents and two brothers died from heart/stroke issues which has me on alert.

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Such a good question, Glenn. Aneurysms are followed with brain imaging studies (CT, MRI) over several years to ensure they are not growing.

You might find this article helpful:
– Brain Aneurysms Need Watching, Not Worrying https://www.loyolamedicine.org/about-us/blog/brain-aneurysms-need-watching-not-worrying

The title of the article seemed to be speaking exactly to you. I know you are worried, given your family history. Have you worked out a monitoring schedule with your doctors that makes you feel comfortable?

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@colleenyoung

Such a good question, Glenn. Aneurysms are followed with brain imaging studies (CT, MRI) over several years to ensure they are not growing.

You might find this article helpful:
– Brain Aneurysms Need Watching, Not Worrying https://www.loyolamedicine.org/about-us/blog/brain-aneurysms-need-watching-not-worrying

The title of the article seemed to be speaking exactly to you. I know you are worried, given your family history. Have you worked out a monitoring schedule with your doctors that makes you feel comfortable?

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Based on my most recent MRA findings this infundibulum outpouching measures 2mm and they claim there's no need for alarm until we're talking 5mm. My cardiologist said he considered this normal physiology. I can't keep getting CT scans every 6 months I'll die from radiation. This sounds like a catch 22 situation.

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