[canagirl]

I recently found another forum on neuropathy. I have searched before but never found anything. It made me even more depressed. I didn't find any stories of improvement.
There were so many posters that claimed sfn and yet had difficulty with balance and walking and said they were housebound etc.
I've been telling myself that the one " good" thing about sfn is that I should be able to continue to be able to function relatively normal. I'm so sad to hear this is not the case.
With my non stop twitching and vibrating I think i have motor involvement but my emg on lower arm and lower leg didn't pick that up. Just carpal tunnel.

What are your thoughts?

[Healthgirl]

There is a small fiber neuropathy Facebook private group you can join. I do hear positive stories there.

[Kitt]

Originally Posted by canagirl

I recently found another forum on neuropathy. I have searched before but never found anything. It made me even more depressed. I didn't find any stories of improvement.
There were so many posters that claimed sfn and yet had difficulty with balance and walking and said they were housebound etc.
I've been telling myself that the one " good" thing about sfn is that I should be able to continue to be able to function relatively normal. I'm so sad to hear this is not the case.
With my non stop twitching and vibrating I think i have motor involvement but my emg on lower arm and lower leg didn't pick that up. Just carpal tunnel.

What are your thoughts?

What was the name of the forum? Thank you.

[icelander]

Originally Posted by canagirl

I recently found another forum on neuropathy. I have searched before but never found anything. It made me even more depressed. I didn't find any stories of improvement.
There were so many posters that claimed sfn and yet had difficulty with balance and walking and said they were housebound etc.
I've been telling myself that the one " good" thing about sfn is that I should be able to continue to be able to function relatively normal. I'm so sad to hear this is not the case.
With my non stop twitching and vibrating I think i have motor involvement but my emg on lower arm and lower leg didn't pick that up. Just carpal tunnel.

What are your thoughts?

I basically agree with your assessment of the situation. Very few if any really make that comeback but many still feed off that hope. I have completely gotten over that notion. However in the area of palliative care I've made some real progress. Mostly because my doc depends on my research more than his limited knowledge and he's really been helpful with scripts for all the stuff I've discovered and some of it is really helpful. So that's where I do my working and hoping.

[Neuroproblem]

Originally Posted by canagirl

I recently found another forum on neuropathy. I have searched before but never found anything. It made me even more depressed. I didn't find any stories of improvement.
There were so many posters that claimed sfn and yet had difficulty with balance and walking and said they were housebound etc.
I've been telling myself that the one " good" thing about sfn is that I should be able to continue to be able to function relatively normal. I'm so sad to hear this is not the case.
With my non stop twitching and vibrating I think i have motor involvement but my emg on lower arm and lower leg didn't pick that up. Just carpal tunnel.

What are your thoughts?

There is a forum for neurology, which was moderated by docs/nurses, but there doesnt seem to be activity in forum for year. there is one with category for neuropathy but, its really hard to get questions answered, because of the other numerous conditions.
I found one that specifically deals with Dysautonomia,(autonomic Neuropathy), but it doesnt let you ask questions right away.

[v5118lKftfk]

I did a huge hunt for forums all over the internet early on.

I found this to be by far the best, purely on neuropathy.

If neuropathy comes from another condition, i.e. diabetes, chemo, ms, aids, etc, sometimes you get information from a slightly different angle if you search on neuropathy in a forum for that condition. For example, I found some good pn conversations on cancer chemo forums.

There are some neuropathy specific to other regions of the world. However, I find their info is just a subset of what is here. There aren't many other english-speaking western countries with the population size of the US and so there are just more people contributing to other regional forums, although occasionally they do come up with a slightly different angle.

Overall, I find the info here to be more solid, comprehensive.

Hope this helps,

MakeABigWish

[canagirl]

Originally Posted by Kitt

What was the name of the forum? Thank you.

Healthboards neuropathy section.

Sorry, just like everyone else here I'm having a tough time. I can't picture the rest of my life. I was looking for other forums so I could find stories of healing. But just like on here, there doesn't seem to be any. ( I knoe glentaj has had some) . My nonstop vibrating and pulsing is driving me mad.

[JoannaP79]

Originally Posted by canagirl

Healthboards neuropathy section.

Sorry, just like everyone else here I'm having a tough time. I can't picture the rest of my life. I was looking for other forums so I could find stories of healing. But just like on here, there doesn't seem to be any. ( I knoe glentaj has had some) . My nonstop vibrating and pulsing is driving me mad.

I know we all have different etiologies but I feel that ivig is the only thing yielding some hope. May be miniscule and may not help certain types such as genetically inherited but are most of you not fighting for access to this?? I am continually on at my neuro to refer me. I have the giant obstacle which is NHS and funding. I won't stop going on until I get a trial. I know it isn't the cure all but it just has to be tried where suspected autoimmunity surely?

[Neuroproblem]

Originally Posted by canagirl

Healthboards neuropathy section.

Sorry, just like everyone else here I'm having a tough time. I can't picture the rest of my life. I was looking for other forums so I could find stories of healing. But just like on here, there doesn't seem to be any. ( I knoe glentaj has had some) . My nonstop vibrating and pulsing is driving me mad.

I use that site as well, but the neuropathy section is rarely visited, because of the more popular categories, MS, dental, diabetes and the categories include other non-neurological diseases as well. I found what seems to be good site specific for AUTOnomic though. but that since doesnt let you post anything right away.