Advice needed

[seaspray1998]

Peripheral neuropathy is also difficult to diagnose, due to the fact that whatever version you have of it, as it can affect each person differently, even if they have the same disorder.

 

[Adelle0607]

Peripheral neuropathy is also difficult to diagnose, due to the fact that whatever version you have of it, as it can affect each person differently, even if they have the same disorder.

It feels like a "constant current", I'm used to it now

 

[seaspray1998]

That's why it's important to have ALL the tests done - tilt test to see how it's affecting yr blood pressure, qsart test etc

 

[seaspray1998]

Adelle please look on Kings college hospital website, peripheral neuropathy section.

There are treatments - IVG, plasma - it may or may not work for you, depending on yr particular neuropathy - but it is UTTERLY CRIMMINAL that you should be simply left to hang, and 'just live with it'

 

[seaspray1998]

This is what drives me nuts, if you were diagnosed with cancer, you wouldnt be told to just go home and 'live with it'

Even if yr prognosis wasnt good, they'd throw everything at it to try to either cure it, or at least delay the progression of it.

Plus get oodles of support too.

 

[Adelle0607]

Adelle please look on Kings college hospital website, peripheral neuropathy section.

There are treatments - IVG, plasma - it may or may not work for you, depending on yr particular neuropathy - but it is UTTERLY CRIMMINAL that you should be simply left to hang, and 'just live with it'

Thanks for the info @seaspray1998. These doctors just give you b12s and you walk out the door and that's it. They don't seem to care just as long you don't have issues with weakness and balance...it's frustrating, you feel like a hypochondriac. I need to go to someone who has the expertise as you said on "small fiber neuropathy" and I do want to seek treatment for it. I wonder if they have it in Oz as well...Thanks @seaspray1998

 

[seaspray1998]

It's just scandelous!

This is why I'm seriously thinking of setting up a facebook page for advice, info, support, as everything is American based and there seems NOTHING for anyone in the UK

 

[seaspray1998]

Adelle let me tell you that in the case of small fiber neuropathy you are told that you dont have to worry about it ever affecting yr balance etc.

WRONG!

In some cases it CAN progress to affecting yr balance

 

[seaspray1998]

And I didnt even know that until I did my research, and then when I said this to the small fiber neurologist, he confirmed it.

It's just shocking the ignorance even amongst neurologists

 

[seaspray1998]

Adelle if you ever want to talk, just add me on Skype as seaspray1998

 

[Adelle0607]

I'm now worried but I have to think positive. And hopefully I get the right treatment....Thanks so much for the info @seaspray1998, I'll arrange an appointment and hopefully it gets sorted out soon.

 

[Adelle0607]

Adelle if you ever want to talk, just add me on Skype as seaspray1998

Thank you @seaspray1998 for your support xxx

 

[seaspray1998]

Also have you been tested for carpel tunnel syndrome?

 

[seaspray1998]

What exact symptoms do you get if you dont mind me asking?

 

[seaspray1998]

[QUTE="Adelle0607, post: 612146, member: 116645"]Thank you @seaspray1998 for your support xxx[/QUOTE]

Adelle, with small fiber neuropathy there probably isnt a treatment - but yve got to try whatever is out there.

My best advice to you is do RESEARCH, RESEARCH, RESEARCH! For instance I found that in Holland they have successfully used a cream to treat the pain of small fibre neuropathy.

Also medical cannabis - not the kind that gets you high but the kind that has the tch pain relieving properties.

Why should you be forced to take drugs like garbarpentin that can have MASSIVE side effects, when there are potential alternatives out there

 

[Adelle0607]

[QUTE="Adelle0607, post: 612146, member: 116645"]Thank you @seaspray1998 for your support xxx

Adelle, with small fiber neuropathy there probably isnt a treatment - but yve got to try whatever is out there.

My best advice to you is do RESEARCH, RESEARCH, RESEARCH! For instance I found that in Holland they have successfully used a cream to treat the pain of small fibre neuropathy.

Also medical cannabis - not the kind that gets you high but the kind that has the tch pain relieving properties.

Why should you be forced to take drugs like garbarpentin that can have MASSIVE side effects, when there are potential alternatives out there[/QUOTE]
Yes best to research, and only took one dose of gabapentin and didn't like the side effects....it occurred out of nowhere, the pins and needles, just woke up one day with it then has been on and off since.... thank you!!! Will look up that cream in holland x

 

[Adelle0607]

Yes best to research, and only took one dose of gabapentin and didn't like the side effects....it occurred out of nowhere, the pins and needles, just woke up one day with it then has been on and off since.... thank you!!! Will look up that cream in holland x[/QUOTE]

 

[seaspray1998]

Get all the tests done that exist out there to diagnose a neurological disorder.

You may not even have small fiber neuropathy, it could be another form of neuropathy.

Get an oral glucose test done.

Research for the best neurologist specialising in min specialism of peripheral neuropathy.

Even if you dont get any joy at first, carry on until you do.

Be prepared to be treated like yr an attention seeking hypocondriac - but dont let them put you off

Download from the link from the American neuropathy association, the leaflet about peripheral neuropathy.

 

[Adelle0607]

Get all the tests done that exist out there to diagnose a neurological disorder.

You may not even have small fiber neuropathy, it could be another form of neuropathy.

Get an oral glucose test done.

Research for the best neurologist specialising in min specialism of peripheral neuropathy.

Even if you dont get any joy at first, carry on until you do.

Be prepared to be treated like yr an attention seeking hypocondriac - but dont let them put you off

Download from the link from the American neuropathy association, the leaflet about peripheral neuropathy.

Thank you ogtt done February (t2), I'll arrange for a consult...... xx

 

[seaspray1998]

Also push to be referred to a pain management clinic/doctor.

And if you have a rubbish ignorant gp doctor - switch to another, even to a different practise.

I'm in the process of firing mine!