Small fiber neuropathy and B12 deficiency

[Ashley820]

After a normal brain and spine MRI, normal EMG and nerve conduction study, and normal labs (apart from low b12), I found out yesterday that the results of my skin biopsy show small fiber neuropathy. The neurologist said most likely due to the B12 deficiency.

Upon researching small fiber neuropathy, I came across some interesting things. SFN is often misdiagnosed as other things like IBS, which I was diagnosed with a few years back. I started working with my GI a few weeks ago to see if I have small intestinal bacterial overgrowth and was prescribed a short-term medication that has completely changed my bowel habits for the better. I’m really hoping it stays this way.

I was taken off protonix for GERD in August when I was found to have low B12. I’ve been managing fine with the occasional Tums, but now I’m having a sharp pain on my right side that I’ve had previously and was associated with gastritis. I’m hoping for answers from my doctors on how to manage it without causing issues elsewhere.

Also, heart palpitations and low BP are associated with SFN, but also with B12 deficiency so I’m unsure which has caused mine.

My anxiety has worsened tremendously over the last few years. I’m sure in part due to a personal traumatic experience but I can’t help but wonder if all of these things are connected in some way. I’m finding it challenging to have a primary doctor, a GI specialist, and a neurologist all treating separate issues when I feel like it’s all woven together somehow. I share information from each visit with the others, but I wish there was a way to connect the dots with my health issues.

[LTD1]

Hello Ashley,

Interesting. I have been off this board for sometime but saw this post this morning. I too took Protonix for 10 years for GERD. Doctor said it was safe, so why not? Then my feet started going numb, slowly, progressively. Got diagnosis of idiopathic PN. Spent a few years seeing Neurologists and other Doctors and had 3 abnormal EMG's to prove my feet were in fact numb. Otherwise, no cure and no supplement or drug or balm or whatever will ease the numbness and odd sensations. While getting the blood work done, it was noted my B12 was under 200 which is odd for a healthy, meat eating male in his late 30's. I thought this might be the smoking gun and immediately received B12 injections and took the suppliments and eventually got the value back into the 450 range which is normal I'm told. No improvement in the nerve damage however. I went off the protonix when the numbness began and haven't taken them in years. I also got diverticulitis and my lower colon removed. This happened a few years after going off protonix. Since the protonix drastically reduces stomach acid, I wonder if my prolonged use caused these other issues? I haven't seen any scientific research on this, but the use of these proton pump inhibitors is so rampant and has been for decades, I would think if this was happening frequently, we would know about it, but who knows? I do see now that PPI use is only recommended for short term solution to reflux and NOT for extended use. God, I took them every day for 10 years, because they said they were safe! I take nothing now, the nerve damage in my feet slowly gets worse and it appears I will just have to live this way. Scary to think about the future and what it might look like. My advise to you is to accept what is and work on your mental outlook on living day to day in the present. None of us are guaranteed a healthy future, and there are far worse diseases to have, so try not to let your PN effect the quality of you life. I know, easier said then done...

[Ashley820 in reply to LTD1]

My GI doctor still maintains that protonix is safe. Seems most people I know take PPIs. I wonder if we’re just some of the less fortunate ones to develop low b12 and neuropathy from them. I guess you have to weigh out the risks and benefits for each medication. I know I’m going to need something for my GERD... unmanaged GERD can lead to its own issues later on. I was only on Protonix for about 18 months. Such a delicate balancing act to manage separate things that impact other things. I’m definitely grateful that I’m dealing with this and not something worse. Pretty sure anxiety meds are in my future though.... it’s been years of me trying to manage it with diet, exercise, and counseling. I’m just one of those people who can’t turn off the worry and having health issues and small children definitely hasn’t helped that any 😕

[LTD1 in reply to Ashley820]

For the record, I'm not at all sure the protonix caused my low B12 and/or Diverticulitis and subsequent nerve damage. It's purely speculation on my part. I manage my reflux now with diet. Eat healthy foods, no late night meals and little alcohol and I haven't needed any medication for my reflux. Occasional Tums I guess. I'm told Protonix was safe too, but I no longer trust it just because a Doctor says...

[Sasical]

Hi, do you mind sharing which meds improved your gastro issues? Thanks

[Ashley820 in reply to Sasical]

My GI doctor put me on Flagyl 250mg 3x a day for 7 days. I was told that it would cause severe diarrhea while on it but then I would notice an improvement if it was in fact SIBO. I never had diarrhea while on it and only have a few times since I finished it 2.5 weeks ago. For someone who was in the bathroom multiple times a day, this is a big deal for me. The only issue now is that I’m only going every 3rd day so opposite end of the spectrum there. Ahhhh to be normal and just go once a day lol

[LTD1 in reply to Ashley820]

I took flagyl and ciprofluoxitine when I was suffering from Diverticulitis attacks. Interestingly, there is a lot of information (and lawsuits) against pharma companies related to this class of antibiotic for causing, among other things, Peripheral neuropathy. They are harsh medications, but essentially were needed to save my life during attacks until I could have the surgery to remove the damaged intestinal section. For me, my nerve damage started a couple years prior to taking the flagyl etc., so they were not the cause for me. One other thing I can pass along from my GI doctor who operated on me. He said the likely cause for my diverticulitis was poor diet (American diet) too much processed food. Very guilty as charged when I was in my 20's. Eat healthy now. But anyway, he recommended additional Fiber (even after my surgery) to make sure I didn't get Diverticulitis again. So for over 5 years now I've been taking Metamucil (powder dissolved in water). Can't recommend this enough. It regulates your system naturally. No issues now. I take it every day. It is natural and safe and not just for people in their 80's

[Ashley820 in reply to LTD1]

Thanks for the info!