View Single Post
Old 01-30-2017, 09:45 PM
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

So Dearest Sue,

I saw the Epilepsy Specialist today. The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System. I don't have Epilepsy

Autonomic nervous system - Wikipedia


The second 'bad news' is that there no medication for my problem. The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient.

So, I will just have this condition, as it stays the same or gets worse, with no treatment.

I am very sick with this bronchitis which is going around, and that is new for me, too. I haven't been sick for over 3.5 years, since I started IVIG. So I am just not a happy camper all around.

The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down. I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that So it's some other part of the adjustment system.

In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up. The human body is amazingly complex, and every time I see a new specialist my mind boggles.

The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication. So I will always wonder when I will collapse again?

I feel very alone in this, but my husband is very supportive, which is a big help.

Hugs, ElaineD
ElaineD is offline   Reply With QuoteReply With Quote