New to PN - Seeking Advice
 

Hello everyone,

I am a 30 year old male who works in online learning in an higher education institution.

My symptoms began in the right two fingers of my right hand. I do significant computer work, so the pain/numbness in those fingers would exasperate with use, but would subside with rest.

Over the period of 3-4 months, my fingers would get progressively worse and the pain/numbness would not easily subside with rest. At this point, I went to see a hand surgeon suspecting cubital tunnel. I had a nerve conduction study which came back normal. At this point I was referred to a neurologist.

It took me 6 weeks to get into the neurologist and during this time I began manifesting new symptoms including weakness in the right hand, numbness and pain in the right two toes of the right foot. Anxiety also began to play a role in amplifying my symptoms, at times causing numbness/tingling in the face. I also began dealing with electrical shock feelings in the right side of my body, usually the right leg.

The neurologist sent me in for an MRI on the brain and spine without contrast. Both came back negative (I did have a slight bulging disc in C5/C6, but nothing anyone seemed alarmed about). I also had my thyroid and B12 levels checked, both came back within normal ranges, though my B12 was at the bottom of the normal ranges.

Overall, I had been coping fairly well over the past few weeks, however new symptoms have manifested themselves. For the past 5 days, I have had significant pain in my right thigh and calf. The pain originally began in the right calf, but then worked its way up into my hamstrings. This pain and tightness has flared up several times, at least twice severely. I do not show any symptoms of blood clotting. I have also discerned a tenderness at the top of my leg near my groin, near the bone, which is far more tender than the left side.

After reporting my new symptoms, I saw the FNP who works under the Neurologist. The didn't seem to have much plan of action. I was told to start a multivitamin with B12, given some COQ-10, and they had me run a CK something blood test. They also permitted me to up my gaba dose. Then, they told me to come back in a month.

I walked away somewhat frustrated that the mindset had shifted more from diagnosis to management, which I know is also important.

I'm hoping to get some advise on how to proceed. I'm still dealing with numbness/pain in my right hand and foot, as well as that tightness pain feeling in my calf.

How aggressive should I be pursuing a "diagnosis" if one exists?
How much am I risking in the mean time by not having a diagnosis?
How important is physical therapy to helping with leg pain?
Should I seek a second opinion or find someone who will be more aggressive in ruling our possibilities?

I'm so new to all of this. I'm trying to be patient and yet proactive, learning all that I can.

-Doug

Welcome to NeuroTalk:

I'd suggest you take activated B12 separately, in high dose, for 3 months and get retested. This would be methylcobalamin 1mg if your test was around 400pg/ml. If your results were lower than that, you would do better to take 5mg methylcobalamin daily....on an empty stomach...no food for 1 hr after.

Ranges in US still go down to 200 or so and that is pretty low.
If you tested near 400 then that is just borderline.

Watch your sugar and carb intake too, as that can begin pre-diabetic nerve damage.

You can buy methylcobalamin now at Walgreen's and Costco. Or online at Amazon.com or iherb.com or Puritan's pride. It is not expensive and often is the first thing to fix when people get nerve problems.

Get your vit D checked too, because fixing that will improve things if low and supplemented.

B12 and Vit D are often low in American adults today.
Are you taking a statin for cholesterol? CoQ-10 is often given for that, as well as CPK testing levels.

Hi Doug, welcome.

This is the rude awakening most—if not all—of us have experienced.

These questions are difficult to answer, partly because there are over 100 causes/resons for peripheral neuropathy, and aside from diabetic peripheral neuropathy, idiopathic is the next largest segment—accounting for ~40% of us. Frustrating can't/doesn't describe it.

Partly it depends on how rapidly (if at all) your symptoms are advancing. Most cases plateau at some point, but others are more aggressive, and those are the cases worth being more aggressive about (IMO).

A second opinion never hurts, and confirmation may quell some uncertainty. Some folks who—for whatever reasons—choose to be more aggressive about diagnosis have found these sites helpful:

http://www.questdiagnostics.com/test...ripheralNeurop
www.lizajane.org

Others of us who are less severe, and can live & function with where we are (neuropathy-wise) try to identify our triggers, find supplements that work for us (it's a trial & error process) and get on with our lives as best we can.

One thing that has helped me cope—especially at the beginning—is awareness of the Kübler-Ross model as applied to chronic illness.

Doc

Thanks for the warm welcome. I tested at 240 for B12 (I believe the normal range said 200 to 700?). I do have a family history of pernicious anemia. My vitamin D should come back soon from a physical.

I am not taking anything for cholresterol, though mine does run in the low 200s. The FNP said that COQ-10 could help with muscle functionality. Let's just say I didn't have the highest confidence in her.

By taking B-12 separately, is that so that it's easier to rule out whether it's helping or not?

-Doug

Thank you for your response and these resources. I think the fear of the unknown right now is as difficult to cope with as the neuropathy. Anxiety can definitely make things feel worse!

Oh, my. Something in the 200's is really low. The ranges have not been updated in US yet...to the new low of 400pg/ml.

If PA runs in your family, this could really be a serious factor for you. Do the 5mg methyl version daily on an empty stomach. Not all is absorbed by far, but enough will be without intrinsic factor if you take it correctly. There is no way enough for you in any multivitamin product. If you have PA you won't have intrinsic factor to help with absorption from food.

Do you take acid blocking drugs for heartburn regularly? These also decrease B12 absorption.

It is important to get the methyl version (and NOT the cyano version)...this is the active form the body uses.

A good CoQ-10 is Qunol brand...it has been especially solubilized for better absorption. It is at Costco and WalMart at an affordable price. 100mg a day is all you need basically if you use this brand. The older forms of CoQ-10 in oil gel caps are not as well absorbed and you'd have to start at 300mg a day if you choose those.

Welcome takemyall7. :welcome_sign:

Thanks again for your advice. I've started a separate B12 supplement as of today. I'll look into the CoQ-10 stuff. I'm not used to handing over so much $$ for stuff like this. :P

As far as B12 absorption is concerned, I don't take anything that would necessarily reduce it. I am lactose intolerant (though less in recent years), which can be a factor. I've been pretty clean otherwise from any meds or supplements for most of my adult life.

Thanks! Look forward to reading more here.

Vitamin Deficiencies
 

So I've decided to become more aggressive in ruling things out for my PN. I want to start with vitamin deficiencies. Thanks to advice here, I've started a B12 supplement since my B12 was at 240.

What other vitamins and neutrients play a major role in neuropathy that I should verify my levels for?

-Doug