NeuroTalk Support Groups - Idiopathic small fiber neuropathy

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Idiopathic small fiber neuropathy (https://www.neurotalk.org/peripheral-neuropathy/186805-idiopathic-fiber-neuropathy.html)

That one hour level--

--is high.

Moreover, the big drop from hour one to hour two does suggest at least a degree of reactive hypoglycemia.

A draw at one-and-a-half hours would have been interesting to see, as would concomitant insulin levels along with the blood glucose level draws; I bet there would have been a big insulin spike, probably "out of range", somewhere around one to one and a half hours.

Quote:

Originally Posted by en bloc (Post 1095377)

That is sad to hear this. Repeat biopsies (especially after a course of treatment) to gauge improvement or disease progression is one of the best features of the biopsy.

How else can they tell if the fiber density has increased or gotten worse? You could consider printing some of the documentation that supports repeat biopsies...if you think they would even read it or be open to the idea. New medical technology does no good when doctors stop being teachable.

It wouldn't make any difference in treatment/management to have a second Bx. Even if the biopsy showed improvement, and someone is still experiencing symptoms, they're treatment will stay the same. Biopsies are not always used to monitor clinical progression. sometimes they are simply used for diagnosis.

Quote:

Originally Posted by JHop11 (Post 1096937)

I disagree and agree.

In many cases insurance requires certain treatments to be done first, before proceeding to a higher cost treatment. A follow up biopsy after 6 month course of immune suppression for autoimmune neuropathy, may confirm that fiber density has not improved and therefore allow patient to receive higher dollar treatments like IVIG.

It can also be used to continue IVIG treatments by showing improvement (whether or not the patient still has symptoms).

However, you are correct that biopsies are sometimes used simply for dx. Sometimes, this is enough to get approval for treatments like IVIG and insurance doesn't question it down the road for continued therapy.

Don't forget that some treatments carry high risk or possible reactions. For some patients that may have some decrease in symptoms (but still some problems) the f/u biopsy is very helpful to SEE exactly what is being accomplished and if just more time is needed or it's not worth proceeding.

It's a case by case decision as for whether the f/u biopsy is helpful or warranted.

Thanks for that. I'm still trying to get a grasp on all this. I have a glucose monitor and was using it that day to try to track things with the test, but it died on me. The last reading I got was 267, but I questioned that because it died shortly later (not the battery).

My regular doc just ordered another A1c test which I bet will be normal just like it was in July. It was 5.3% then.

Interestingly, I also just learned I have a high sensitivity to casein, the protein in dairy. I drink a glass of milk daily, have cream in my coffee in the morning, and usually eat yogurt and cheese on a daily basis too. They probably provide a big hunk of the carbs I'm eating right now, and they have to go.

Apparently this intolerance results in an immune response that causes systemic inflammation. This is something else I need to learn about now.

Quote:

Originally Posted by glenntaj (Post 1096845)

hello janieg, wondering how are you after these years and if you found anything new in the mean time. I am pretty sure I ma suffering from SFN as well

thanks

Quote:

Originally Posted by SFNgirl (Post 974221)

Hi, this is my first post, am totally new to this sort of thing. I started reading your posts over the last few weeks and decided I should join. You all have provided so much helpful information, very appreciated for the newly diagnosed.

I began having back pain and nerve symptoms last October, and after months of tests, was diagnosed in january through skin biopsy with idiopathic small fiber neuropathy. I have gripping pain in my feet and freezing burning pain in my feet, legs, torso, back and neck. My hands mostly just go numb periodically, mostly at night in my sleep. In the midst of this, in December, I had an extremely painful attack in my face which took me to the ER and was diagnosed with trigeminal neuralgia. In hindsight, my doctors do not believe its that but somehow related to the rest. Have any of you had this connected to your trigeminal nerve?

I am taking 2700 mg of gabapentin, Tramadol, Nortriptyline at night, and just finishing 2 month trial of steroid infusions. None of it seems to help.

I have seen mention from a few of you about a smaller subset of non length dependent type of SFN, given my body wide symptoms, am wondering if I fit in that category. And if so, is this something to pursue that might lead to an identification of an underlying cause or different treatment plan?

Thanks for listening,
SFNgirl

Hi SFNgirl
I was taking Lyrica (same as gabapentin) for my nerve pain and it helped for a while then stopped, I wasn't prepared to keep increasing the dose so weaned off it under medical supervision. I'm finding that R Alpha Lipoic Acid (natural substance) is helping me just as well as the Lyrica was. May be worth a try, but make sure you get the one with R in name, the one without isn't natural.
Hope it can help you as it's helped me.

Hi George,

Keeping it short and sweet...still have it and am still idiopathic. Just went through an annual neuro check where MRIs were again perform from my brain to lumbar. Still no signs of demyelination, and all other tests were normal.

Janie

Quote:

Originally Posted by GeorgeQ (Post 1274998)

hello janieg, wondering how are you after these years and if you found anything new in the mean time. I am pretty sure I ma suffering from SFN as well

thanks