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My experience with Small Fiber Neuropathy
Hi there. Thank you to all the people who support this forum.
I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.
I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.
A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.
I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.
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Holy cow John, this demands my attention! Thanks so much for being such a wealth of resources for all of us! I am very grateful! Many blessings, Sunnyflower
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2 ReactionsHi @nukan
I'm confused about your vitamin B12 issue. If you have "absorption problems" your vitamin B12 levels should be low, not high.
Are you taking B12 supplements? That would explain your very high levels.
Jeff
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1 Reaction@laureen8844 I don't remember what articles I read. I googled causes of twitching, and there are several articles from reputable sources.
Jim
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1 ReactionThanks Jim ...These twitches are driving me mad...very scared 🙁
@laureen8844 Me too. One of the causes listed is antidepressants. I recently started Cymbalta for neuropathy pain, and the surge in twitching seems to have happened about the time I reached full dose. Two nights ago I backed off from 90mg to 60, and the twitching at bedtime became much less severe. I'll know more after a few days.
Jim
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1 ReactionThank You Jim
No that is incorrect . Your Vitamin B stays in your blood and that is where majority of blood tests read. The vitamin B isn't getting to vital organs and thus they are deficient . you need to get Methylmalonic Acid test along with folate test. That gives you a true indication of your Vitamin B level. I understand why you ask the question. I had top educate my own Dr.
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3 Reactions@jimhd Jim, I thought 60 mg was the maximum dose of Cymbalta. I was told to start with 30 mg, and work up to 60.
Hello lauren8844
The methylmalonic acid test is a more sensitive test for vitamin B12 deficiency. It is used as a follow up test for those that have low or low normal levels of B12, particularly if they have symptoms, such as those patients with PN.
B12 is a water soluble vitamin secreted by the kidneys. It does not "stay" or accumulate in the blood. This is even true of people who have B12 absorption problems.
The folate test has nothing to do with the B12 test or problems with B12 absorption.. It tests for the level of another B vitamin, folic acid.
I'd be curious to find out if @nukhan is taking supplements, particularly B12. If so, that would explain the high B12 level on the test.
The proper order would be a screening B12 test, then, if indicated, a methylmalonic acid and homocysteine test. If the last 2 are abnormal, a problem with B12 absorption is present. There are many causes of this condition, including old age.
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1 ReactionJeff
Really don’t understand the point of your reply . Yes the acid is a more sensitive test . That was my point. When your organs aren’t processing your B vitamin correctly it does accumulate in your body. You get a false reading . My vitamin b levels were always normal despite the fact I was a heavy drinker. My Dr gave me the acid test that showed was highly deficient. He also gave me a folate test at the same time . That he said confirmed the deficiency. I am not a Dr but that is what he says . I looked online and there several different reports that seem to back up what he was saying. I didn’t say folate had anything to do with level of absorption . I said it used to measure my deficiency.