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-   -   New to Small Fiber Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/181323-fiber-neuropathy.html)

BlueSkyBaby 12-20-2012 04:10 PM

New to Small Fiber Neuropathy
 
I was diagnosed as a type II diabetic 16 years ago with "controlled" HA1C under 7.0 all this time - no medications. Until August, when it hit 7.2 and now I'm on metformin, 1000mg/day.
I had a year of tender feet then in May of this year they started to burn. They are now stabbing and burning. My insomnia is severe and has lasted about 2 years, and it is idiopathic if not related to high blood sugar or budding neuropathy.
My EMG was normal, all bloodwork other than diabetes normal. The neuro who did my EMG said I might have Small Fiber Neuropathy, and I read every medical article on it I could find, brought it up to my family doctor, who said I have diabetic neuropathy and put me on Gabapentin, now up to 600mg 2x a day. Yet on the outtake sheet to give to billing, from my discussion with him, he wrote the ICD codes for Type II Diabetes, "Without Complications" and "Unknown Psychophysiological Disorder". He thinks I'm depressed. By the clinical definition of depression sure I am, but so is every person dealing with real sickness.
I'm trying to get FMLA paperwork filled out before my job goes into jeopardy because I've missed about 10% of my time due to either terrible pain or lack of any sleep or both. With gabapentin, getting used to the side effects has had a real impact on my productivity too. (Sit down intellectual type job.):confused:

1) How did you actually get your diagnosis of small fiber neuropathy?
2) Did anyone else have trouble with their general doctor?

mrsD 12-20-2012 04:30 PM

Welcome to NeuroTalk:

Basically to address your question... impaired glucose tolerance begins before diabetes is diagnosed.
So things may have been brewing before you started the metformin.

Metformin also blocks B12 absorption in many people, so I'd get a B12 test ASAP, and it should be 400 or above. Don't accept "normal" from your doctor, because the ranges go down to 200 and that is too low for nerve health we know now (for over a decade). The lab ranges just have not changed, and doctors are robots when ranges are printed out by the labs. Low B12 levels cause nerve damage.

Methylcobalamin (the active form of B12) is the cofactor for melatonin synthesis from serotonin. If you are low, you cannot make melatonin the sleep hormone for yourself. Therefore methylcobalamin is the ideal form to supplement with if you need it.

You should also get a Vit D level done too. And come here with those results as well, because the D2 the doctor will give you has been found to not work well. You would need D3 OTC instead.

Those are the first things you should look at.

There are other supplements for diabetes, but get those done first and out of the way.

glenntaj 12-21-2012 05:52 AM

One of the problems is that many doctors--
 
--even many neurologists, are not all that familiar with small-fiber neuropathy. In fact, many will tell you that if your nerve conduction studies and EMG are normal, you don't have neuropathy at all. But nerve conduction studies and EMG's can only measure gross abnormalities of larger, myelinated nerve tracts; they are simply too gross a measure to find small-fiber damage. THAT can be documented through specialized testing--qualitative sensory testing, autonomic testing, or the current gold standard--skin biopsy to measure the density and condition of intraepidermal fibers.

It's annoying that this still goes on, as small-fiber syndromes are the most common presentation of diabetic nerve damage, as researchers such as Aaron Vinik have documented through many, many studies. It is thought that is such cases the nerve damage is primarily caused by ischemic compromise (circulatory breakdown) rather than direct nerve assault; glucose dysregulation leads to inefficiency of small blood vessels, which cannot bring nutrients/oxygen to the nerves and cannot carry away toxic metabolic by-products, so that the nerves starve and get poisoned over time. This is why anything that helps diabetics improve circulation (especially exercise) is important in combating the spread of the neuropathy. Tight blood sugar control is also necessary.

Marie33 01-13-2013 09:58 PM

Quote:

Originally Posted by glenntaj (Post 941382)
--even many neurologists, are not all that familiar with small-fiber neuropathy. In fact, many will tell you that if your nerve conduction studies and EMG are normal, you don't have neuropathy at all. But nerve conduction studies and EMG's can only measure gross abnormalities of larger, myelinated nerve tracts; they are simply too gross a measure to find small-fiber damage. THAT can be documented through specialized testing--qualitative sensory testing, autonomic testing, or the current gold standard--skin biopsy to measure the density and condition of intraepidermal fibers.

It's annoying that this still goes on, as small-fiber syndromes are the most common presentation of diabetic nerve damage, as researchers such as Aaron Vinik have documented through many, many studies. It is thought that is such cases the nerve damage is primarily caused by ischemic compromise (circulatory breakdown) rather than direct nerve assault; glucose dysregulation leads to inefficiency of small blood vessels, which cannot bring nutrients/oxygen to the nerves and cannot carry away toxic metabolic by-products, so that the nerves starve and get poisoned over time. This is why anything that helps diabetics improve circulation (especially exercise) is important in combating the spread of the neuropathy. Tight blood sugar control is also necessary.

" It is thought that is such cases the nerve damage is primarily caused by ischemic compromise (circulatory breakdown) rather than direct nerve assault"

Glen this is very interesting to me..
I was dx with "mild" prediabetes (a1c 5.8, 2hr GTT 167) around the same time my neuropathy pain-symptoms started. Endo Doc dosnt think my PreD caused the small nerve neuropathy. So I am told its "Iodpathic"! :confused: EMG-NCS were normal. skin biopsy showed small nerve neuropathy.
I also have a condition called micro-vascular agina. My heart and large arteries are fine, (angiogram normal) its the small vessels and capillaries that constrict blood flow on exersion that causes some angina pain. Cardiologist says its not dangerous its just more of a "nusiance". My question is: do you think my small nerve neuropathy (nerve damage\pain) could be caused by "ischemic compromise" ..or direct nerve assult. Still searching for a cause..im thinking anything is possibe. what would you suggest for nerve relief or healing? Thanks as usual for your helpful input!

mrsD 01-13-2013 11:09 PM

Marie, I don't recall if you are using a magnesium supplement in some form. If not, I'd highly suggest it now.

It might help with this type of angina you have. Magnesium opens up small blood vessels. Also Vit E added to it helps as well. Get the "natural" type, and use about 800IU. See if that helps. Magnesium oxide does not get absorbed, so do not use that type...it is very common still :rolleyes: .

mg neck prob 01-14-2013 12:44 PM

[Skin Biopsy confirmed mine but took alot of test fo determine the cause if its not diabetic realated ---mine turned out to be thyroid problems....me and all my brothers are on thryoid meds now. Whech makes me think its in our gamily gene pool. Best of luck!!

Marie33 01-15-2013 01:54 PM

MgNeck,
Thanks for your reply. Did your Doctor do alot of blood tests before they did the biopsy? The reason I ask is because I had sooo much blood work too, including thyroid tests to find a cause. After all tests came back normal, my Neurologist decided to go ahead and do the skin biopsy. That confirmed SNN but I still do not have a cause. If you dont mind me asking. what are your symtoms of your SNN and are you taking anything for your pain or healing?
Did you have thyroid symptoms besides neuropathic pain?
Thank you in advance..best of luck to you too!!

mrsD 01-15-2013 02:00 PM

I had pretty good hair and nails to start with.

But I notice that my skin in general is in better shape and heals quickly from scratches, etc. (I have cats, you know).

But biotin does alot of important metabolic things that we cannot see, that are associated with proper mitochondrial functions.

http://lpi.oregonstate.edu/infocenter/vitamins/biotin/

Marie33 01-15-2013 02:05 PM

Quote:

Originally Posted by mrsD (Post 947284)
Marie, I don't recall if you are using a magnesium supplement in some form. If not, I'd highly suggest it now.

It might help with this type of angina you have. Magnesium opens up small blood vessels. Also Vit E added to it helps as well. Get the "natural" type, and use about 800IU. See if that helps. Magnesium oxide does not get absorbed, so do not use that type...it is very common still :rolleyes: .

MrsD
Thank you for responding. Im taking Doctors Best chelated Magnesium 200mg 2xday. I took your suggestion a couple of months ago.:) So far I seem to be doing ok with it (angina pain related). Do you think I should go higher? btw MrsD do you notice a difference in your hair or nails on the 10mgs Biotin?
I was taking Vit E 400 mgs., always heard it was good for you. But back in 6/2012 my cardiologist told me to stop taking Vit E, he just frowned down on it said I didnt need it, but he never said why, so I just stopped. :confused:

mrsD 01-15-2013 02:08 PM

Some doctors got scared off Vit E after the propaganda article came out on it a few years ago.

400IU is not worrisome and most experts in the nutrition field did not agree with the paper anyway. Vit E can be low in PNers, and
it does help with blood flow. I only really recommend it for
improving circulation. Mostly it comes from nuts. Some small amounts appear in flax oil and fish oil supplements to act as an
antioxidant.


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