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More Than Just Pots


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I'm hunting for anyone to give me advice on where to go for more help. I am declining faster than I?d like to admit. Dr.s say besides dysautonomia, POTS, MVPS, premenoupause, intermittent neurogenic bladder they think I have some degenerative autonomic disorder.

My BP goes up instead of down upon standing. My pons and cerebellum in my brain have minimally begun to shrink according to my MRI comparisons. I have a catheter because of urine flushing episodes which do horrible things to my body. I have less symptoms by keeping my bladder completely empty by catheter.

I am now with hospice because of my rapid decline. They put me on oxygen to help with endurance and it has helped. I often have slowed or slurred speech. My movements are sometimes slowed or shaky. Other times my speech is normal and while laying or sitting I appear almost normal. I am mostly house bound. I have a w/c and can minimally use a walker on a good day. I have begun this weekend having diaphragm spasms that constrict my breathing. I have begun having swallowing issues (like choking on my own saliva?how gross [and scary]!) in the last few weeks.

Mayo clinic in MN has denied me once and we are considering reapplying. Local Dr.s don?t know what else to do with me but to prepare me for the worst. I feel like I have death sentence.

Anyone have any words of wisdom?

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Hi there,

I'm so sorry to hear all that you've been going through :D It sounds like things are very quickly spiraling out of control, and I'm sure it's terrifying to have so many things go wrong with your body at once.

I hate to ask, but have you looked into ALS? The difficulty speaking and swallowing tipped me off. I know that there are some treatments for ALS so if you do have it, it's best to find out right away. Have you been to a good neurologist? A good cardiologist?

You might also want to look into some of the more agressive autonomic neuropathies...although the BP rising is an abnormal symptom for many autonomic neuropathies...PAF and MSA I think both have trademark HYPOtension rather than HYPERtension.

I wish I had more answers for you...but hopefully someone on the forum might have better ideas.

-Lauren

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