Recently diagnosed w/ Small Fiber Neuropathy -- now what?

mrsD · 05-26-2012, 06:42 PM

Quote:

Originally Posted by APJH

Doc said my B12 numbers were at the low end of the normal range. I started taking 1000mcg today, as directed. I see my regular MD next week and will ask him if he thinks I should increase it.

Thanks for your response!
APJH

Are you taking cyanocobalamin or methylcobalamin?

When using oral you should take on an empty stomach as food will block absorption.

Here is the B12 informational thread with medical citations:
http://neurotalk.psychcentral.com/thread85103.html

Low end of the old normal range is at or below 200.
The new cut off for normal is 400 (US units)
Methylcobalamin is best now, because the cyano form has to be converted to the methyl anyway. If you have a genetic error in this conversion (which is pretty common--- 10-30% of people have this called the MTHFR polymorphism), you cannot make methyl form from cyano and it won't work. Methyl form is very inexpensive and affordable and available online at many outlets today.

Since only about 10mcg is absorbed from 1000mcg oral, it will take a while to get up to a better level. Hence the higher dose will work better and faster. But that is your choice after all.
The oral absorption only really works well on an empty stomach as well, so make sure you do that at least.

We see so many people here who are not being given adequate treatment for B12 deficiencies. So if you know all this information already, please excuse me, but a large number of those coming here are either never tested, and/or never treated properly. Many doctors don't even know what methylcobalamin is (the biologically active form for B12).

mrsD · 05-26-2012, 06:48 PM

Think about this:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

Susanne C. · 05-26-2012, 07:38 PM

Quote:

Originally Posted by APJH

Hi Susanne. Thanks for your response. What is CMT?

We have no neuropathy in our immediate family, though I may dig a bit deeper into this possibility.

Thanks again for your response. This is all a big mystery to unravel!
APJH

CMT is Charcot Marie Tooth, also known as hereditary sensory motor neuropathy. There is no way of knowing how many idiopathic cases are actually hereditary. I was not able to get medical history from my father which delayed my diagnosis,but many people do not realize they have it, or it may even skip a generation. How are you on steps? Are the muscles in back of your legs unusually tight?

Kitt · 05-26-2012, 08:16 PM

Quote:

Originally Posted by Susanne C.

CMT is Charcot Marie Tooth, also known as hereditary sensory motor neuropathy. There is no way of knowing how many idiopathic cases are actually hereditary. I was not able to get medical history from my father which delayed my diagnosis,but many people do not realize they have it, or it may even skip a generation. How are you on steps? Are the muscles in back of your legs unusually tight?

Hi Suzanne,

CMT does not really skip a generation. It's just that symptoms might not be that evident and so they are blamed on something else.

You are quite right that many people do not realize that CMT is what they have. There are so very many types of it. There are mutations which are considered rare. CMT has often been misdiagnosed as something else even today. A person needs to have a neurologist who is an expert when it comes to CMT.

Symptoms can become evident when you are young, old or in-between. Or as I said they may not be that evident. Symptoms vary greatly even within the same family. It is complicated for sure.

Idiopathic PN · 05-26-2012, 10:05 PM

Quote:

Originally Posted by mrsD

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

Mrs.D, does the effectiveness of supplements is impede when taken along side the prescribed medicines?

Thanks

mrsD · 05-27-2012, 12:05 AM

Quote:

Originally Posted by Idiopathic PN

Mrs.D, does the effectiveness of supplements is impede when taken along side the prescribed medicines?

Thanks

I don't believe so. But I do think that if there are improvements when you are taking many things, it will be difficult to pin down what is doing what.

In this thread the original poster has a diagnosis of low B12.
That should be attended to first, to see if improvements occur with supplementing it.

For Idiopathic patients with no B12 deficiency then typically they are on some RX medications when they come here. And many times are not getting the relief expected. So adding in some supplements, may help and turn things around. It is easier to
spot these improvements, because they were stalled using what the doctors gave. Each case is somewhat unique, therefore.

People with terrible dietary habits or gluten intolerance, may be low in many things as well (magnesium, antioxidants, B1). And people with mito damage, may need the combos (CoQ-10 +Acetyl carnitine + lipoic acid) for improving mitochondrial functions.

These are examples, of why I tend to ask lots of questions...because the answers may point to a different approach for that poster.

Dr. Smith · 05-27-2012, 12:17 AM

Quote:

Originally Posted by APJH

Thanks so much for your response. I'm going to print out the list of meds you provided and take it to my doc next week. Let's see what he says.

By all means. Just don't be surprised if he scoffs (he may or may not), but he shouldn't have any objections to your trying them. My own experience went something like this:

I got retested and a second opinion at a major medical center (which creatures do tend to be on the conservative side). The PN specialist there, who's supposed to be the best guy in the area, told me there was nothing to do, and gave me a prescription for gabapentin. Having done some homework in advance, I asked him about R-Lipoic Acid & Acetyl L Carnitine (I didn't learn of Pantothenic Acid until later) and his response was, "Well, I've heard they're doing something with that in Europe, but we don't have any studies supporting it here. If the gabapentin doesn't work, I might mention those others to a patient if they want to [try them]." (That's actually pretty close to his exact words.) I don't know if it was just him, or that he's a cog in the AMA/Med school machine, but his response sounded pretty lame to me; Europe isn't exactly Lower Slobbovia. I did manage to talk him into writing the prescription for a lower dose (again, from homework and previous experience).

Some of the more progressive doctors are on board, or getting on board, with these supplements; the more stodgy conservative Citadel dwellers aren't - they're quite frankly behind the times. I have no idea where your doctor may be on this; I hope he's one of the savvy ones.

My current doctor is much more open-minded/progressive, and we have a great rapport/relationship.

Links to studies and other information supporting use of these supplements can be found in the PN Tips, Resources, Supplements & Other Treatments Sub-Forum, in the "Sticky" threads at the top of this forum, or by searching Google and/or WIKIPEDIA.

I have the same philosophy as MrsD's in that:

Quote:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

I tried B12 first (and I'm still taking it to keep my nerves fed), and after a month I began the R-Lipoic Acid (which worked very well for me). A month later I tried Acetyl l Carnitine, and after learning of it a few months after that, I added the Pantothenic Acid (B5) and had further improvement.

I mentioned the three of them together, and have no reservations about recommending trying them together, because there is so much evidence that they work in conjunction. Seperate or together is up to you.

By use of just supplements, lifestyle changes, and to a lesser extent diet, I've halted the progression of my PN and actually gotten some improvement.
http://neurotalk.psychcentral.com/post880426-220.html

Doc

Idiopathic PN · 05-27-2012, 07:42 PM

Quote:

Originally Posted by mrsD

I don't believe so. But I do think that if there are improvements when you are taking many things, it will be difficult to pin down what is doing what.

These are examples, of why I tend to ask lots of questions...because the answers may point to a different approach for that poster.

I like when you (or doctors) ask more questions. This helps us reveal some details which we think may be insignificant to our condition. Also, when you ask questions, this means that you are really interested to help.

Thank you for your concern to all of us.

hopeful · 05-27-2012, 09:17 PM

Quote:

Originally Posted by APJH

Hi everyone. I'm new to this forum; was recently diagnosed with Small Fiber Neuropathy and today found out I tested negative for just about every potential cause (autoimmune diseases, diabetes, HIV, hepatitis, etc.).

It's good news, but I'm very confused, frustrated and anxious.

First off, let me say, my neurologist is fantastic--one of the top in his field at a fine hospital (NYU). He is extremely thorough and I trust his opinion.

I am a 40-yr-old female, in good health, about 20 lbs. overweight, but in reasonably good shape (worked out 3x a week until 2 months ago) and fairly healthy diet (no fast food or soda; lots of veggies, whole grains, lean meat).

A few years ago, I began experiencing numbness, tingling and burning in my feet. In 2011, I finally had an EMG & MRI. Results showed nothing. Then, earlier this year, the tingling and numbness turned to PAIN, so I had another MRI--this time it showed nerve damage & edema in both feet/ankles. Skin biopsies on ankle & hip showed Small Fiber Neuropathy.

I started on 300mg gabapentin in late April, now up to 1200mg. But it doesn't help w/ the pain and it makes me drowsy and foggy. I also have blurred vision, shortness of breath and short-term memory loss. And I feel physically exhausted ALL day (I walk with a cane & take the subway to work each day--lots of stairs!).

Now, my doc suggests I try Cymbalta, but I want to read more about it first. Also, he did say my B12 was slightly low, so I'll start taking 1000mcg a day.

Though I have my share of stress and anxiety, I'm happily married, have a good job, 2 cats and close-knit family. I'm generally a happy person, but after 2 months of pain and limited mobility, I'm sad, listless and indifferent. Part of it is not being able to exercise--that's my stress relief. Also, living in NYC, I'm used to walking EVERYWHERE and I miss it terribly. Now, I'm depressed most of the time. I feel like I'm missing out on everything, but at the same time, I don't want to take part in anything because I can't enjoy it.

I'm also horribly sad and frustrated because, after months of tests, we have not determined any cause for my pain and immobility. I'm overwhelmed by the notion that this pain could just continue indefinitely.

So that's my story. I'm considering acupuncture, homeopathic or dietary remedies (other than B12). I wonder if Cymbalta would help with depression or make it worse? Any advice or suggestions would be helpful!

Thanks for listening and be well...

APJH

Hi, I like all the anwers everyone has given you. Starting with the supplements may be how you want to start. However, I do take Cymbalta. I tried all the anticonvulsants and a few other meds before taking Cymbalta. I have to tell you it was the first thing to help with my pain. Everyone is right, this med will not help to cure your SFN but it may give you some relief. It may even have the extra feature of helping your depression.
I remember how it was in the beginning. I have had this for just about 4 years now. The most important thing to remember is you do get use to it. (I know it sounds crazy). You learn to live with it if you don't allow it to take over your life. Take one day at a time. Remember there are alot of people here that can help.

APJH · 05-30-2012, 01:36 PM

Quote:

Originally Posted by mrsD

Think about this:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

Are you saying I should quit taking the gabapentin and just try the B12 by itself? Or just that I should hold off on switching to Cymbalta or another painkiller? (I've been taking B12 for 5 days now, but I will ask my doc if I can increase from 1000mcg to 5000mcg.)

Thanks!
APJH

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