[glenntaj]

--are an interesting finding; that's rare enough (and you're right, they're usually associated with Miller-fisher syndrome and various brainstem/cranial/ocular symptoms) that they should be investigating deeper, possibly to see if they can reconfirm that finding or if there is cross-reactivity from other antibodies to gangliosides (especially the GT1a antibody, also associated with cranial/brainstem syndromes).

You do sound like a candidate for skin biopsy, to confirm that the small-fibers are damaged. My sense is that if you are having brainstem issues, that could show up on a thermal (quantitative sensory) test, but the skin biopsy would directly sample the small fibers.

Take a look at

http://neuromuscular.wustl.edu/over/labdis.html#gq1b

http://neuromuscular.wustl.edu/patho...ngliosides.htm

[lucinda 2009]

Many thanks for the really informative and helpful replies. You sort of want the doctors to be the experts but unfortunately that may not always be the case, I've booked to see my GP on Thursday to ask for copies of various tests going back as maybe its cultural but here we just tend to be told within normal range or not.

Food log is a great idea Mrs D, my family has a history of allergies, I too was hypothyroid in pregnancy 1 and had non malignant goitre, thyroid levels were normal again upon retesting, goitre grew larger in pregnancy 2 but remained non malignant, what is a radio uptake scan please - is that the same as testing to see if the goitre was malignant? My neuro had a eureka moment in Dec with Carpal Tunnel but, after the sseps/nerve conduction studies decided it was not. Yes the wrist supports are fab and add a certain glam to gardening, particularly the flesh coloured ones

Glenntaj, thanks for those links have looked at them and am going to print them out to try and get my head round them - what do you mean by brainstem issues please? I had an mri in july and they found nothing bar a little brain lesion of unknown aetiology and doubtful clinical significance was the sort of wording. I am seeing a PN expert at the end of the month so if I ask for GQ1B and GT1A retest and small fibre biopsy that should cover things - what about a spinal tap do you think that would provide further info.

Thanks again

Sarah

[lucinda 2009]

I now have my results for B12 (which is within range) and serum folate was the only one out of the range apart from the thermal testing:

B12 on 5th Feb was: 571 ng/l (range 145-637)
serum folate was: 19.3 mg/ml (range 3.8 - 16.00)
hdl cholesterol was 1.42 (range >1.68)
* I have been taking a pantethine supplement along with my multivits since around october last year

[dshue]

Originally Posted by lucinda 2009

Many thanks for the really informative and helpful replies. You sort of want the doctors to be the experts but unfortunately that may not always be the case, I've booked to see my GP on Thursday to ask for copies of various tests going back as maybe its cultural but here we just tend to be told within normal range or not.

Food log is a great idea Mrs D, my family has a history of allergies, I too was hypothyroid in pregnancy 1 and had non malignant goitre, thyroid levels were normal again upon retesting, goitre grew larger in pregnancy 2 but remained non malignant, what is a radio uptake scan please - is that the same as testing to see if the goitre was malignant? My neuro had a eureka moment in Dec with Carpal Tunnel but, after the sseps/nerve conduction studies decided it was not. Yes the wrist supports are fab and add a certain glam to gardening, particularly the flesh coloured ones

Glenntaj, thanks for those links have looked at them and am going to print them out to try and get my head round them - what do you mean by brainstem issues please? I had an mri in july and they found nothing bar a little brain lesion of unknown aetiology and doubtful clinical significance was the sort of wording. I am seeing a PN expert at the end of the month so if I ask for GQ1B and GT1A retest and small fibre biopsy that should cover things - what about a spinal tap do you think that would provide further info.

Thanks again

Sarah

It's great, and necessary, to be an agressive advocate for yourself, because doctor after doctor will really have no idea what is going on.

But I always cringe, and then wallow in self pity, when I see the word spinal tap or the letters LP. I've full body small fiber neuropathy, burning every day, and I went in search of IVIG (along with every other avenue I found) and had an LP performed. Obviously, it is a helpful diagnostic tool in many situations for most people. But it made my problems exponentially worse, creating an often debilitating havoc in my spine ever since.

So if you are indeed dealing with standard (and really, I know there's nothing 'standard' to one's pain and suffering) PN, stay far away from a spinal tap. It won't tell you anything you'll be able to find out from all the other tests available in regards to neuropathy.

-- Dennis

[glenntaj]

--are rarely a diagnostic clincher in and of themselves, unless one has some sort of central nervous system infection that is picked up there (i.e., meningitis or encephalitis), but often the protein levels, and the kinds of protein that are found, can be a clue to processes going on in the body, particularly autoimmune ones, and that's why they are often performed in more ambiguous cases for which other tests are not clinching a diagnosis (such as early MS or immune neuropathies).

[lucinda 2009]

Originally Posted by glenntaj

--are rarely a diagnostic clincher in and of themselves, unless one has some sort of central nervous system infection that is picked up there (i.e., meningitis or encephalitis), but often the protein levels, and the kinds of protein that are found, can be a clue to processes going on in the body, particularly autoimmune ones, and that's why they are often performed in more ambiguous cases for which other tests are not clinching a diagnosis (such as early MS or immune neuropathies).

Many thanks Dennis and Glenntaj for your advice, definitely sounds like one not to go for - I really appreciate the great recommendations as it saves me going down a path that sounds as if it could potentially cause more problems or tell me nothing that is new.

Sarah