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Old 05-05-2011, 04:37 PM
autoimmunesux autoimmunesux is offline
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Join Date: May 2011
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10 yr Member
autoimmunesux autoimmunesux is offline
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Join Date: May 2011
Posts: 3
10 yr Member
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Originally Posted by en bloc View Post
I too have AI disease (Sjogren's & APS) with severe autonomic neuropathy, gastroparesis, and PN. The only really means of treatment for autonomic dysfunction is to treat each aspect individually. There are several meds for NMH (neurally mediated hypotension), like florinef, midodrine, high salt diet, avoiding caffeine, and always staying hydrated. Even compression stockings can help.

Gastroparesis can be managed sometimes by diet alone. Small mechanically soft meals (grind up meats) and avoiding "raw" fruits, veggies, and nuts. Also avoid eating in the evening to prevent night time symptoms and raise the head of your bed slightly (either with a wedge pillow or the frame itself). If you have significant problems still, there is domperidone (not available in the US, but very easy to get from Canada with a doctor's Rx). It is quite helpful. Stay away from Reglan as it can cause permanent movement disorders.

I have other autonomic dysfunctions: Balance, lack of temp regulation, livedo reticularis, cardiac vasospasms, difficultly urinating, etc. There are many systems that are autonomically controlled.

I also used IVIG for 11 years, then got severe aseptic meningitis in 2006, so will not get it again.

What is your autoimmune disease? What have you been doing so far in regards to treatment for both the AI and the autonomic problems?
Hi en bloc
I am now being tested for sjogrens, as the dr thi ks I have that in addition to the autoimmune autonomic neuropathy. I tried the florief plus many other meds and had reactions to all and that is why only doing ivig. Being you did ivig for 11years I am assuming it helped, if you don't mind me asking are you now doing worse than before you quit. Also why did you stop the ivig after getting aseptic meningitis? Did the dr decided or was it a personal choice? For after I had it the dr gave me the option to quit but said with the paraneoplastic antibodies I have I likely wouldn't get better without it, being we tried so much already.
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