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Old 07-20-2014, 08:42 PM #1
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ElaineD ElaineD is offline
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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 Peripheral AND autonomic AND Small Fiber Neuropathy

Hi, I haven't posted for quite a while.

I've had so much going on for so long, but now that I'm getting IVIG for my Immune Deficiency and I am no longer sick all the time, I'm beginning to sort out my problems.

I always knew I had PN. But now I realize that I also have autonomic neuropathy (which is also called dysautonomia), and small fiber neuropathy.

Essentially almost all the nerves in my body are affected.

I am also taking Medrol to deal with side effects of the IVIG. And now I've added Neurontin to help with the pain and burning and tingling of the various neuropathies.

So I some ways I'm beginning to feel almost 'normal'. I also had PT for my legs and feet (the peripheral neuropathy) and while I'm not great, I have more confidence and I appreciated getting specific attention to how I walk and what to do to improve.

I am going for testing of the Positional Orthostatic Hypotension Syndrome, and hope for more testing to follow.

I still have a copper deficiency, although taking 10 mg of copper daily has brought my blood levels up to near the bottom of normal. So I keep taking it, a long with the iron.

For me the key has been working with an excellent neurologist.

Hugs, ElaineD
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