Peripheral neuropathy

[KiPeRi75]

Am getting a private appointment (deep breath over cost!)

So I'm ready - how do I know for certain that my achy tingly legs are peripheral neuropathy?

[Hidden]

Gosh; I'm not sure you can have that certainty in advance...its often more a matter of eliminating other possible issues, MRI of head to eliminate tumour etc. Normally you get some neurological exam , things like can you walk a line, how much do you feel sharp and soft objects on legs and feet, if you can stand upright with both feet together, arms out and eyes shut , reflexes were checked in my case, tuning fork used etc.

If you want to read up , have a look at the links in this topic, see:

pernicious-anaemia-society....

Wishing you good luck with your appointment!

Kind regards,

Marre.

[KiPeRi75 in reply to Hidden]

Thanks Marre - you're a star.

Have booked appt for 26th. Have asked his secretary to check he knows about pa - he specialises in diabetes & thyroid ( both of which I have) so hopefully he is open to pa probs too. I was so disappointed with my gp - when I first went to him when I'd had enough- told him about my achy legs/tinnitus/hair loss/brain fog/fatigue he said we would get through it together - then all he's done is double my anti depressants for a month (stopped that now), this week he's stopped my statins (my request as my sister had memory problems with simvastatin) and shrugged about my legs.

Like so many all we want is for Dr's to know what they're talking about and give us the treatment we need without having to fight or pay for it.

Sorry for the rant - thanks again

Jan x

[Hidden in reply to KiPeRi75]

Oh dear you have got a selection of conditions that all can give neurological issues, hope your appointment goes well, and you feel it was worth it! Marre.

[KiPeRi75 in reply to Hidden]

Sorry that was a big moan - onwards and upwards!

[Mrs_Somerset in reply to KiPeRi75]

moan away my dear - that is what we ae here for !!

we know what you mean, we can sympathise with what you feel and we a re here to lsiten, anytime - i myself find a quick rant very beneficial, especially if I have just seen my doc!

The people here have always been so supportive of me, and freindly and we are here for you, any time

Big Hugs and good luck,

M

[KiPeRi75]

Thanks to you too M, I replied to you last night - but it's not on here!

It's good to be able to offload sometimes, even though family and friends are supportive (mostly!) they don't really understand, and underneath all the frustration of poor Dr's, there is the worry about all our symptoms.

J x

[KiPeRi75]

Heard today that the private Dr I'd booked in with doesn't have expertise in PA but would see me as a general physician which I don't think is going to be any good. Really disappointed as I read that he specialises in diabetes and thyroid which I have too, so it would have been good to have someone who understand all my conditions and could give me some answers and advice.

[Hidden]

Its very hard to know what to recommend, no one seems to cover all conditions, first for PA would be haematologist, then neurologist if required..I found a haematologist very useful, she did know a lot and tested for thyroid etc as well, but perhaps I was lucky, not every one has good experiences with specialists.

[KiPeRi75]

I think I'm going to have to speak to someone at the hospital and be specific in what I ask for.

Just wish it was easier!

[KiPeRi75]

The cost of an initial appointment to see the haematologist is astronomical so I guess I will have to see the 1st Dr after all and hope he can help

[Miah11]

Go to a neurologist. There is a test, I do not recal the name of it, he can take a small plug out of your leg/area in question after administering a local numbing agent. The plug is sent to a lab where each nerve fiber is carefully counted, you will get a number which tells you how many are in that area. That is how I found out.

Hope you are able to take the test, but it is my understanding the medications are strong for it and opted not to take them. Of course, then you have to deal with the pain...its terrible and I am sorry you are dealing with it but knowing helps to at least understand why your leg doesnt want to cooperate or why you lay in bed, like me right now, feeling like your leg is on fire and cant sleep!