just a quick update on my B12 and the CMT issue Rose asked about earlier. Had blood work again - nearly same as before, real low normal B12 (410 vs 402). My PCP was going to do shots but of course these are not covered by my insurance so I started 1000mcg of cyanocobalamin.

Interesting aside during the bloodletting. Drawing tube #4 of #7 the tech began to get antsy as the tube wasn't filling very quickly, as in not at all - so??? The solution here was to withdraw the needle and try a new vein. We had at this for 3 more shots before the light dawneth and the tech determined that the vacutainer was shot. Glad this became apparent since she was drawing a dotted line across my arm. 1st time she'd ever seen that, me too - I was a medic many years ago so I've been on both sides of the needle.

In any event I'll certainly keep up the B12 regimen now and hope for some evidence of improvement over time.


Re: CMT. My PCP is more interested to have me undergo the genetic testing, especially when I told her my mama has PN as well (I switched PCP's just recently). She's had it for many years now not painful, just loss of sensation (I'm not trivializing that, just contrasting hers vs mine).

In any event in this part of the country the only lab that does the testing is Athena in Worcester, MA, nowhere else that my doc knew of. As usual my insurance doesn't cover this either, batting 4 for 4 now (Anodyne therapy, ESWT, B12 shots and CMT testing). The cost is steep, ~$7K w/out insurance when the doc spoke to Athena so I'll have to see how best to arrange this.

In the meantime, she's also looking into some other causes, specifically, hexane and toluene, 2 solvents I've used for many years in my work. Both have been reported to cause PN so maybe there are other mitigating factors for me - it seems that the plot may thicken.

Sorry for the long post

Alkymst
Alkymst

Thank goodness you can do something about the B12 deficiency and CMT angles without the tests or shots you can't afford.

I'm glad you are taking the 1000 mcg cyanocobalamin. Now, to optimize the likelihood of being helped, I hope you will get a good brand of methylcobalamin. For many this is not necessary, but for some it is crucial.

CMT cannot be cured, but it is doubtful that you would be treated (or treat yourself) any differently if you have it. Essentially, getting your nutrients, avoiding toxins (including any drugs that are not necessary) and excessive amounts of B6, stretching, and doing but not overdoing are the things a person with CMT should do.

Looks like you are exploring intelligently. Best wishes to you.

rose

You mention starting on 1000mcg of cyanocobalamin. I do believe you should be taking 1000 or more of B12 methylcobalamin versus cyanocobalamin.

I have been taking this methyl kind since last spring/summer, as much as 3000mcg a day sometimes, and my last blood test had my B12 over 1000. Have you read any of Rose's information on B12 - http://roseannster.googlepages.com/home.

I order mine through iHerb and use the Jarrow brand - http://www.iherb.com/store/ProductsL...ethylcobalamin

I hope this information is helpful to you.

Rose beat me to the punch - people are looking out for you for sure.

Diana,
Thanks for the suggestion - yes I am reading through Rose's info - it's slow going for me - too much to read and too little time to do it in. Rose also suggested looking for Me-cobalamin so I'll look into that quickly.
Thanks too for the website for the B12
Alkymst