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3 days ago · Happy Thanksgiving to you! in Neuropathy

Hi John,

I found your reply to my genital concern and was pleased to see the research you found linking it to SFN. It's just another maddening symptom of SFN. I wondered if it was connected to SFN because I saw 5 different ophthalmologists, some several times, with questions about my vision going in and out of focus like someone flipping a light switch. I was told it was only dry eye and that I should use eye drops. I did but they did not help. This genital condition has the same on-off aspect to it. Thanks to you and this board I am at least getting some information about what's going on with my body.

I use Comcast Xfinity email. I learned last week that my Mayo Connect emails have been going to my Spam folder. So far, Xfinity tech support has not been able to fix the problem. Colleen, the Director of Mayo Connect has been helping me with the issue. I write this wondering if anyone else if having this problem. I also write this to let people like John know that I was not being ungrateful for their efforts in digging up research that applies to my situation(s). I am writing to thank others who may have responded to earlier inquiries/comments I've made in the past which I thought were not posted or were not found interesting by others. Anyway, here's a big belated thanks for all of the kind, caring and hardworking people on this site.

6 days ago · Internal vibrations in Brain & Nervous System

I forgot to mention another symptom I've experienced about 10 times since this summer. This has only happened at night when I go to bed. All my teeth hurt briefly at the same time. I feel like I'm getting a shock from below the gum line to the top of my teeth in the nerve of the tooth. I feel like I'm feeling the nerve fiber shooting up from below the gum. I haven't read of anyone else experiencing anything like this. Luckily, this is not present that often but I worry that it will become so like the cut feeling I have in my tongue.

Mon, Nov 25 10:38am · Internal vibrations in Brain & Nervous System

Someone asked me to post my symptoms but I was not feeling well at the time and so I never responded. I do have a diagnosis of small fiber neuropathy with my first symptoms in 1999. Subsequent to the onset, I took 1600 mg of Neurontin and 10 mg of Flexeril which helped me sleep. I was a zombie until 2 or 3 pm the following day. My pain was primarily in my tailbone after taking the drugs and getting some sleep. However, upon awakening, my tailbone was on fire. This continued until I retired about 8 years later in 2007 due to the pain and my inability to function well with poor sleep and medication side effects. When I retired I decided I was going to get off of meds. I tried several times before having success in about 2008. I was off of meds for no more than a month before the tailbone pain worsened and what had been experienced as cold feet turned out to be PN. The pins and needs, shearing flesh pain moved up my legs until my doctors were urging me to take more Neurontin which I did but not at the 1600 mg level. My chronic digestive issues worsened and after a month of uncontrollable diarrhea I was put on Creon for over a year which helped a little. Three years ago I was hospitalized for a heart attack which turned out to be something else. For the last 6 or 7 years my symptoms have been typical of what people reported here… numbness in my feet sometimes extending to my hip, a feeling like I have pins or nails in toes and fingers which was better described by someone here as a feeling like being pinched by pliers. My neurologist of 4 years told me symptoms do not go beyond the arms but it was this site that helped me understand that my vision issues, focus going in and out, and sometimes a burning sensation in the middle of my eye, could be related to SFN. I also have burning in my ears, tinnitus, a feeling like I have a cut in my tongue, and occasionally dry lips, mouth and numbness in those areas. But all, if not most of these symptoms have been reported by others.

Here is the purpose of my lengthy, but not comprehensive, background. I have another issue which I wonder if it is related to SFN. I mentioned this to a new primary care physician a couple of years ago but this was at the end of our time and he just waved me off indicating he didn't want to hear about it.

This other issue is an embarrassing one but I'm at a point of needing to find out which direction I need to go even though I'm damn tired of seeing doctors. I get a partial swelling in my penis without any sexual thoughts or stimulation. This is particularly embarrassing when talking to my male neighbors in that I sense they can tell. This happens when I'm alone doing yard chores or when I'm alone at the computer like right now. I would appreciate anyone telling me if this could be SFN and that I just need to ignore it or whether it might be a symptom of something else. I have googled it but I did not find anything.

Sun, Nov 17 3:24pm · Unknown Cause or Idiopathic SFN in Neuropathy

Hi Carol,

Were you diagnosed with SFN via a skin biopsy? Are you better now?

Fri, Nov 8 5:12pm · Aching legs from Small Fiber Neuropathy in Neuropathy

I haven't gotten any emails in the last few days. Is no one posting or did I get bumped off the board?

Mon, Nov 4 1:24pm · Help asking doctor if this is small fiber neuropathy or something else in Neuropathy

Hi John,

I subscribe to Consumer Lab which defines itself as an independent lab. They posted the following on B12. I know you are doing fine on the Facebook protocol but 40 drops of that liposomal B12 seems like a lot. Here is what Consumer Lab reported:

"Although no "Upper Tolerable Intake Level" has been established, there are risks associated with getting too much B-12 from supplements. At a dose of 500 mcg (one-sixth the amount in your supplement), an increased risk of colorectal cancer was reported in a placebo-controlled study of older people. Doses of just 20 mcg per day or higher have caused outbreaks of acne and rosacea . A high-dose B complex supplement (with 1,000 mcg of B-12) hurt, rather than helped, people with type 1 or type 2 diabetes and advanced kidney disease , resulting in a worsening of kidney function and an increase in the risk of heart attack, stroke and death.

In women who are pregnant, excessive blood levels of vitamin B-12 have been associated with an increased risk of autism in their children.

Taking some B-12 is advisable for people over the age of 50 (when you're less able to extract B-12 from food), as well as for those taking medications that interfere with B-12 absorption (such as Prevacid, Prilosec and metformin), strict vegetarians, alcohol and drug abusers, people recovering from surgery or burns, and those with bowel or pancreatic cancer. But the amount needed to avoid deficiency is small and nowhere near the amount in the supplement you describe in your B-complex.

If you decide to take a B-12 supplement, you may want to choose one that has the right dose for you and has been tested and Approved by ConsumerLab.com . Be aware that sublingual and dissolvable B-12 supplements often contain sugar substitutes that can cause gas, bloating, and diarrhea in some people — particularly if taking multiple pills. You can use the Ingredients listings in CL's Review to spot and avoid these ingredients.

In general, it's best to avoid excessive doses of any vitamin if it is not needed."

What do you think?

Sat, Nov 2 12:07am · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

Here's a link to a nutrition documentary I saw on Netflix, 'What The Health':

https://www.bing.com/videos/search?q=what+in+the+health+documentary&view=detail&mid=78262E9F3B8F32A42EBC78262E9F3B8F32A42EBC&FORM=VIRE

I also watched Game Changers & Forks Over Knives

I'm back to being a vegan.