I was a bit upset last night so didn't write to update you of my neuro visit.

Essentially tests showed no indication of large fibre or demyelinating Peripheral Neuropathy so the neurologist didn't really want to know me after that. Said that I could go to my GP and he could start me on Amitryptylin (sp).

I felt very fobbed off and upset. I received NO validation at all for the symptoms I am having, in fact almost the opposite. She even said that the 'mind' is a powerful thing and can create all sorts of symptoms in the body.

I asked her about writing me a request for the extra B12 test she said "your GP can do that".

At the end after I asked a few more probing questions she did kind of concede that it may be a small fibre neuropathy . She also said that she had eliminated the possibility of diabetes and I asked "which test was that" and she said "the nerve conduction test".....but I am sure (& I didn't say this to her) that diabetics can manifest with a wide variety of symptoms and signs, such as distal, proximal, symmetric, large fibre, small fibre neuropathies etc etc. Anyway I don't think I am pre-diabetic, so that isn't an issue.

What is an issue is the way you can be dismissed so easily.

Anyway last night I concluded that there must be 'nothing' wrong with me and I would wake up this morning feeling totally fine with not a burning in my body or a fasciculation anywhere.......WRONG!

HI Megan, I'm SO sorry for all you are going through. I had the whole series of tests...and Nerve conduction test and all came back ok......it wasn't till I had the Nerve/muscle biopsy that it showed Chronic Axonal Neuropathy! My dr. said that most of the time it takes the biopsy to show what the problem is!
Maybe you should try another dr. Talk to your GP about it and hopefully he'll help you find someone who's willing to go farther than the conduction test.
I just feel so bad for you having to go through all this testing! Hang in there, you aren't crazy!

Hi Megan

PM'ed you

Noong

I found another neuro who took the extra steps tho and I've not looked back. I think that your neruo is not as up-to-date as many others are and YES! it hurts to be essentially 'brushed off'. There are other docs out there tho...go find the perfect one! It can happen. I hope it happens for you soon! - j

Hi Mega, so sorry you got that treatment off that neuro, many get the same deal including me first up, did she at least do Quantitative Sensory Testing [thermal test and vibration test] before she come to this conclusion ?

--can never rule out a small-fiber neuropathy; NCV's/EMG's are simply not designed to measure activity in nerves with less of a diameter of about 5mm or so.

Moreover, the most common presentation of a diabetic or impaired glucose tolerance neuropathy is small fibers first. That doesn't mean one can't have large fiber involvement with diabetes or impaired tolerance, but more often one gets the pain and/or numbness and/or temperature sensation disruption symptoms of small-fiber disruption early on. As the mechanism of diabetic neuropathy is primarily due to vascular insufficiency, it makes sense that narrower, more distant from body center fibers would be the first to experience toxicity or hypoxia.

Apparently this doctor needs to read a number of papers, starting with these:

http://www.medscape.com/viewarticle/418568

http://www.endotext.org/diabetes/dia...tesframe28.htm

http://www.medscape.com/viewarticle/418657_5

http://care.diabetesjournals.org/cgi...full/26/5/1553


And there are many more.

It would seem you would need a neuro or other doctor who is a bit more motivated or knowledgable; do you have any options?

And, anyway, have you had a 3-5 hour glucose tolerance test just to make really sure you have no impaired glucose metabolism issues?

So sorry you didn't get anywhere, Megan... Can you get another opinion?

Cathie

All your replies are much appreciated.

I will keep on eliminating the possibilities for this PN. I was wondering whether anyone has an exhaustive list of all the things that can cause small fibre neuropathy? I know that you keep reading over and over the common things for PN but I'm sure the list is a lot more comprehensive (see last paragraph of this message).

I guess the biggest shock for me during the consultation (one minute after I walked in there) was when the neuro said that my GP could look after me, I sat there stunned thinking "hang on, you are meant to be the expert, he isn't an expert on this stuff, that's why he sent me to a neuro (not her specifically), how's he going to know what to do next"?

Last night between being intermittently angry about it all I started to rationalise that she obviously didn't know where to go next.

Anyway I'll leave that alone.....

Glentaj - Regarding the fasting GTT the answer is no. As I said in one of my messages I have only had three random Blood Glucose levels done - not even a fasting one. They all say that my readings fit the guidelines - therefore not necessary to proceed with further testing ....but having read so many articles where they are saying that the oral GTT can reveal prediabetic states and sometimes blatant diabetes I will not rest there. I have an endocrinologist for another condition who I will be seeing next month. He will for sure, order me the GTT if I ask, so I'm not making an issue of it at the moment with my GP.

Yesterday I went to my GP to ask for the Active Vit B12 test, which I had done this morning. I'll see how that goes and if still borderline I'll go ahead and get the MMA done - which is not a standard test here in Australia - although there are a couple of labs that do it, although quite expensive.

Roxie - did you have ongoing pain at the site of the nerve biopsy? One study I read said that about a third of people who have the biopsy have persistent pain at the site.

Maybe someone can help me with this quote! I read in "Peripheral Neuropathy" a clinical review by Richard AC Hughes published in BMJ Vol 324 Feb 23 2002, he says, "Chronic Axonal Neuropathy occurs in patients with many multisystem hereditary disorders". He goes on to give one example - which is the only example I have come across consistently in the literature and that is Charcot-Marie Tooth disease but he doesn't mention any other examples nor does anyone else. If there are supposedly "many" hereditary disorders where Chronic Axonal Neuropathy occurs what are the others?? Anyone know?

wade thru the 'stickies' at the top of this forum?
Here is one:
http://www.eprom.pitt.edu/UL_media%5C149993684.pdf
another is:
http://www.aafp.org/afp/980215ap/poncelet.html

Reading these, you can see that there are many, many paths to take for a diagnosis...at the most you actually GET a diagnosis [name], but, overall TREATMENTs are common for all. Get the treatment first..then worry about the latter.

I myself have found I might actually have a 'heridetary' part to my diagnosis, found by a set of other conditions I have been blessed with. Yet all-ALL of my docs don't seem concerned about going that extra step....even tho when I do reach 'medicare age' it could make a BIG difference in my access to IVIG. Go figger? You do have to learn a 'new language' when you have the kinds of 'stuffs' we have...we have to learn to use that language well to get what we deserve and need. Hope this helps! - j

HI Megan,
About the nerve/muscle biopsy......I had it in June and it's still 'tender'. I have a 4 1/2 scar on the back/outside of my left ankle. It's not an easy surgery. My ankle swelled for 2 months........which my dr. said is normal with this surgery. I have a little numbness on top of my foot and down under my foot.....but I have some feeling coming back there.
I am very happy that my dr. suggested the biopsy after all the other tests came back ok.....he didn't give up on me........many people can't say that.
Don't give up Megan.....Hopefully your gp will suggest a different Neuro....one who knows exactly what you need. Best Wishes!