[Lindyloowho1234]

Sorry, just realised I should have started a new thread with this

Just an update after seeing the Neurologist again yesterday. He went up to 100mcg/h Fentanyl every other day shortly after I posted this and it seems to help. His hands are still sore, but he can cope with it.

All his regular blood tests came back normal (as they always do) - 2 Hr. Glucose was 5.6.

The Neuro is now sending him for a test for Fabry Disease, although he said it normally manifests in childhood? Extreme hand pain is one of the symptoms, but everything else I've read about it doesn't seem to apply to him.

He also said autonomic neuropathy would make him loose the ability to sweat, not sweat profusely as he does - is that correct? I'm sure I've read it could be either.

Is the neurologist just "stabbing in the dark"?
He did admit that he's never seen such horrendous pain from sensory SFN.
Anyone else familiar with Fabry disease and is it likely to show up in an adult?

Thanks, Linda
Lindyloowho1234 is online now Report Post

[Healthgirl]

Originally Posted by Lindyloowho1234

Sorry, just realised I should have started a new thread with this

Just an update after seeing the Neurologist again yesterday. He went up to 100mcg/h Fentanyl every other day shortly after I posted this and it seems to help. His hands are still sore, but he can cope with it.

All his regular blood tests came back normal (as they always do) - 2 Hr. Glucose was 5.6.

The Neuro is now sending him for a test for Fabry Disease, although he said it normally manifests in childhood? Extreme hand pain is one of the symptoms, but everything else I've read about it doesn't seem to apply to him.

He also said autonomic neuropathy would make him loose the ability to sweat, not sweat profusely as he does - is that correct? I'm sure I've read it could be either.

Is the neurologist just "stabbing in the dark"?
He did admit that he's never seen such horrendous pain from sensory SFN.
Anyone else familiar with Fabry disease and is it likely to show up in an adult?

Thanks, Linda
Lindyloowho1234 is online now Report Post

I have autonomic neuropathy and some days I sweat for no reason and some days I should be sweating and don't.
SFN is horrendously painful. So painful that there are times I don't know how I'm staying alive.

[mrsD]

People who use opiates for pain control, often sweat alot.

I am sorry you are having troubles getting a diagnosis. That is pretty typical with PN.