Thread: New to PN forum
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Old 04-21-2009, 11:20 PM
dshue dshue is offline
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Join Date: May 2008
Location: Los Angeles
Posts: 97
15 yr Member
dshue dshue is offline
Junior Member
 
Join Date: May 2008
Location: Los Angeles
Posts: 97
15 yr Member
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Quote:
Originally Posted by lucinda 2009 View Post
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
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