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Old 01-08-2007, 09:39 PM #21
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Default Cmt

Rose, hello and thank you for the question about CMT. That was one of my concerns very early on. My CPK is normal - since I had an MI >30yr ago my cardiologist is really attuned to this. Also, I don't have a high arch, quite the opposite, remarkably flat feet but I know you can have CMT w/ flat feet. Fortunately, I don't show any of the more classic symptoms of muscle wasting, champagne legs, foot drop, or exaggerated gait. Aslo, my phys therapist has worked w/ a number of CMT cases and she doesn't se eany evidence in my ankles. Nonetheless, your query has me wondering again. I'll look into this in more detail - thanks for asking.
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Old 01-08-2007, 10:10 PM #22
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400 for B12 is on the low side. It would be below normal in Japan. I would recommend that you keep taking 1000mcg of methylcobalamin b12 every day. It may or may not be the cause of your PN but it certainly isnt helping.
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Old 01-09-2007, 07:34 AM #23
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Default Yes Dahlek is a Whovian moniker..

and...it WAS originally spelled with the 'h' in it...after I took on the name the spelling instantly [almost] changed!

About B-12 - imortant to keep in mind: It's a deliteful vitamin where mega doses cannot hurt you! Whatever you need or are able to asorb will be 'taken' by your body...the rest leaves harmlessly..as does Vitamin C. The quirk about vitamin assays in blood tests is that the #'s in your blood may be normal..but, what you actually asorb and use require biopsies [No thank you!] to determine.
I'll pass.

Other vitamins tho, as in B-6, can have adverse actions/reactions. That happened in my case as all the different supplements I was taking added up to about 4-6 times the normal tolerances and could have been aggravating my PN. Changing my supplement sources has helped immensely!

If due to your condition[s], you mite have asorbtion issues in taking and assimilating needed vitamins and minerals..well, you need savvy folks like Rose and MrsD for help....they have been consistently generous and kind in helping me demystify some of the complexities and nuances of this world. You really have to get copies of your tests and records...read up on each piece and work at sorting it all out in a way YOU can understand...For some,such things are easy...for others, like me, it's hard work!

Ultimately, you have to get a good grasp at all that's happened, as best you know it..then work out how best to deal with it all. There is no one pat formula, unfortuneately, but there's a lot of trial and error in the journey.

Good thoughts! - j
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Old 01-10-2007, 11:15 AM #24
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Default Dahlek

Thanks for the further info about B12. I'll start B12 again but give it a longer time particularly since you, HeyJoe, and others have all counseled about the benefits.
Sorry I didn't remember the correct spelling of the cute conical critters.
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Old 01-10-2007, 01:34 PM #25
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Default Why should you remember?

It's only been a couple of decades plus since their appearance..
I surely do love the plumber's plungers as appendages! Reminds me of a few medicos I've encountered?
Check out the world of vitamins....I just hope you are not as 'chemistry-impaired' as I am. I 'get' most of it, but that and blood work reports, well, they are WORK to me! The brain fogs over after about five minutes! Sigh?

Pain free bits and pieces for all! - j
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Old 01-10-2007, 03:38 PM #26
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Alkymst,
If you went to Hopkins and were in the neuro dept, Dr. John Griffin (the head of the dept) would surely have been interested in your pre-diabetic Dx, as his main thrust is that PN is.... (in the majority of cases-he says) ...
a leading factor in PN onset. It is part of his long-term, ongoing PN research.
I'm one of his patients, and I joke with him -saying, he'd wait 25 years for a patient to develop diabetes and then say "Ah-Hah!..... See....!!
I told you, you were pre-diabetic - and that was the cause of your PN" .

The B-12 info from Rose is invaluable. I take 1000-2000 methyl every day, sub-lingual. I've been taking it for almost 5 years now and truly believe that it has helped (along with Lyrica & Tramadol) my PN symptoms become more and more manageable.

If you need B6, be careful- the P-5-P enteric coated is your best bet.
I take it to help relieve my carpal tunnel symptoms and it seems to be helping, I've been able to put off surgery, and have only had one cortisone shot (in the wrist/carpal) per year, for the past 3 years. My CTS symptoms have not worsened, or progressed. It has not interfered with my PN meds nor has it exacerbated my PN, in any way.
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Old 01-10-2007, 08:55 PM #27
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Default Dahlek

I can relate to the plumbers' plungers and some medicos - I've developed a critical eye, for better or worse, since I was a medic years ago - when you've been on "both sides of the needle" it gives one a new appreciation for truly talented and skilled practitioners in all areas.
I've been in the vitamin forum and talked to my PCP this evening about B12 again. I'll get tested tomorrow and if low normal like before she'll consider shots. She's going to run intrinsic factor Ab as well.
Since I've dealt w/ clinician types for many years (part of my job) I can usually make sense out of the test results and labs BUT - there are a whole host of other things that give rise to my brain mists, fogs, and blizzards!
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Old 01-10-2007, 09:19 PM #28
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Default nide44

Bob,
Thanks for all the great info about the B-12 and B-6. I just saw my PCP tonight and we discussed how to proceed. If I'm low normal again she'll consider shots so who knows.
I've heard and read about Dr. Griffin and thank you for the info. I was very fortunate to find his counterpart in Philly. Dr. Mark Brown is the head of the neuro group at UPenn and he also specializes in diabetic and prediabetic neuropathies. He too has a long standing clinical and research practice ~30yrs. He's really good and impressed me form the outset.
Thanks again, if something happened to Brown, Griffin is high on my list to see.
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Old 01-12-2007, 06:59 PM #29
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Default Important for you to know your stuff regarding B12

because most doctors don't. And, in fact, relying on a B12 level to have gone down rather rapidly is an indication that one does not know about it.

Treatment is not to be stopped.

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I will be adding much more to my B12 website, but it can help you with the basics already. Check it out.

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Old 01-15-2007, 05:26 AM #30
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. We'll have to talk more since your experiences w/ prediabetic PN will be very helpful to me. I'm looking into water exercises for exactly the reasons you list. I did try oral B12 supplements for a few months but no shots. Maybe the time was too short.
Thanks again for your thoughts - what time is it in Australia now, early AM??
Alkymst[/QUOTE]
.................................................. .................................................. .....
I would be glad to help if i can with the prediabetes . i had plenty of b12 whilst healing and i am still taking it regularly, i never want to go back to the days when i always felt so tired, that doesn't happen at all now.

Last edited by Brian; 01-15-2007 at 05:34 AM.
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