Some Answers, More Questions

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Postby LoveActually » Wed Jul 29, 2009 12:24 pm

Total FRUSTRATION!!!!

I waited about a month to get the results to my brain MRI. When I arrive at the appointment, the doctor told me that she was unable to view the scans on her computer. :evil: The worst part about this is that she told me to go to that particular imaging center and said that they're the only ones they use.

I asked about what kind of B12 shots I'm getting and she said cyanocobalamin. To me, that screams Cyanide! I also asked where she would like my levels to be and she said around 600. She also said that she gives people 6 shots (I've had 2 so far & my 3rd is set for this Friday) and then does labs to check the levels again.

I've scheduled an appointment with a new GP for this Friday. I'm going to take all my labs, scans and test results to her and ask her to refer me to a Neuro of my choice. Depending on how bad these Cyanocobalamin shots are, I'll either get the last one on Friday and try to find a supplement until I can see my new doc, or I won't go on Friday and I'll find a good supplement asap.

So still, no real answers. Low B12, High Cholesterol, Intermediate Seizures but not severe enough to require medication (since I don't even know when I have them), a spot on my brain but apparently not important enough for my doc to find a way to see it.
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Postby Mike56 » Wed Jul 29, 2009 12:58 pm

Unable to view the scans!!!!???? What the hell is the use of making an appointment if the damned Doctor can't even put in the effort to be prepared for it? I'm sure you're hopping mad, I know I would be! A new Neuro is the answer, and make sure the old one knows how she let you down.
I remember my second Neuro appointment, after a brain biopsy that he and the Neurosurgeon recommended after viewing my MRI scans. The Doc asked me if he had seen my MRI scans yet. WHAT????!!!! Why the hell do you think I let you guys go excavating in my head???? It was your idea, not mine.
I went back to my GP and demanded he find me another Neuro. A couple days later my GP talked me into staying with the current Neuro as he is a known MS specialist. (he's also known to be rude, with no bedside manner) I'll be seeing the Neuro again next Thursday, and if he pisses me off again he's going to be fired!

I sure hope your new GP works out for you, as well as the Neuro of your choice!

Mike[/quote]
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Postby jimmylegs » Wed Jul 29, 2009 3:42 pm

how annoying, LA. there should be a text report with any images that provides interpretation, you'd think at least she could have read that to you.

i agree with her saying go for 600. if i were you, since it's only 6 shots i might decide to just deal with it being cyanocobalamin and switch to the better sublingual forms when taking it orally comes into the picture.

when you get the followup tests, ask if they will look at your calcium status? it contributes to your body's absorption of b12.. seizure can be a problem in both calcium and b12 deficiency...

hope the next little while gets less frustrating for you LA!
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Postby patientx » Wed Jul 29, 2009 5:48 pm

LoveActually wrote:Total FRUSTRATION!!!!

I asked about what kind of B12 shots I'm getting and she said cyanocobalamin. To me, that screams Cyanide!


Close, but no cigar. Like many things in chemistry they have very similar names, but are very different.

I checked the bottle of sublingual B-complex I have, and the it lists the B-12 form as cyanocobalamin. Besides, if it was cyanide, Jimmylegs would have keeled over a long time ago.
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Postby jimmylegs » Wed Jul 29, 2009 7:32 pm

In the course of an investigation of vitamin B12 concentrations in body fluids in multiple sclerosis (Basil, Brown, and Matthews, 1965), it was noted that the proportion of total B12 extractable from serum in the absence of added cyanide was higher in cases of multiple sclerosis than in a group of patients with other neurological disorders. This finding might mean that the serum in multiple sclerosis contained an excess of cyanide, or might represent a disturbance in the normal proportions of cyanocobalamin and hydroxocobalamin in the blood (Matthews, 1961, 1962, 1964; Smith, 1961; Anderson, 1964; Basil et al., 1965), and thus suggested the possibility of some disturbance in cyanide metabolism. Chronic exposure to cyanide can produce lesions of the central nervous system, and possibly demyelination, in animals (e.g., Hurst, 1942; Lumsden, 1950; Smith, Duckett, and Waters, 1963; Wilson, 1965), and it has been suggested that cyanide is the toxic factor in tobacco amblyopia, producing hydroxocobalamin deficiency by converting this substance to the cyano- form (Smith, 1961).
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Postby jimmylegs » Wed Jul 29, 2009 7:34 pm

ps. i'm alive and well px :) when i used to take lots of b12 in supplements i took the methylcobalamin form and rejected cyanocobalamin shots. but certainly my b50 complex has the crappy cyanocobalamin form. i'm not dead yet but methyl or hydroxo forms are certainly better.
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Postby Lyon » Wed Jul 29, 2009 8:01 pm

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Postby LoveActually » Wed Jul 29, 2009 8:35 pm

LOL! Thank you everyone. And thanks JL. I see my new GP this Friday and when she refers me to a new neurologist I'll have to stop seeing my current shit bag doctor and will no longer have the shots available. I'll get my third B12 shot on Friday and it may be my last. Then I'll find a healthier supplement.

Luckily, I was able to find what appears to be a pretty decent Neuro with an MS specialty and he has appointments available in August. So I may not have to wait that long.

I also asked my doc why I had a B12 deficiency in the first place. She said since all my other vitamin levels were fine, she assumes that it was intrinsic factors that caused it.
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Postby jimmylegs » Thu Jul 30, 2009 7:23 am

lol lyon!

LA, the doc 'assumes'?! and that would be 'lack of' parietal cell intrinsic factor production, resulting in pernicious anemia.

if you're not a vegetarian, the doc is probably making the correct assumption, however...

so, parietal cell antibody (PCA) test, schilling test, any of these sound familiar? these can help you figure out the b12 situation.

if it is pernicious anemia, there are a few things to consider.

1. PA is associated with a- or hypo- chlorhydria (low stomach acid, which in turn is associated with bacterial overgrowth)

2. it can be caused by a helicobacter pylori bacterial infection (same thing that causes ulcers, and you can kill it with oil of oregano http://www.springerlink.com/content/r4141k0583264m7l/)

3. it is considered autoimmune

you can give your stomach acid a boost with betaine HCL (hydrochloric acid) & pepsin

you can try oil of oregano too. i have some, it's Oreganol P73. mine's liquid. i recommend the gelcaps if you don't enjoy pungent herbal heat! the first time i took it, there was some serious action going down in my guts. it was something else, wow.
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Postby patientx » Thu Jul 30, 2009 2:49 pm

jimmylegs wrote:ps. i'm alive and well px :) when i used to take lots of b12 in supplements i took the methylcobalamin form and rejected cyanocobalamin shots. but certainly my b50 complex has the crappy cyanocobalamin form. i'm not dead yet but methyl or hydroxo forms are certainly better.


Touche, JL.

And I stand corrected. The cyanocobalamin form of B12 does contain a cyanide molecule. Apparently the amount of cyanide is supposed to be too small to do any harm. But it will have to be removed, and the B12 converted to the methylcobalamin form for the body to use.

http://www.health101.org/art_methylcobalamin.htm

http://www.dadamo.com/B2blogs/blogs/index.php/2004/02/07/cyanocobalamin-versus-methylcobalamin?blog=27

http://www.absoluteastronomy.com/topics/Cyanocobalamin
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Postby jimmylegs » Thu Jul 30, 2009 3:05 pm

hey LA, can i ask what other nutrient tests you had done besides b12?
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Postby LoveActually » Sat Aug 01, 2009 12:38 pm

I'm not sure what other tests were done with the one time that I went to the lab. I saw a new GP on Friday and she's putting in a referral for me to see a new Neuro. Thank goodness!!!

My GP looked over all the blood test and pretty much said that the only issue she saw on those test was the B12 deficiency. They did test for anemia, which I was wondering about but it came back negative. The blood test I did was where I had to fast that morning and then they drew 10 units of blood when I first arrived. Then I had to drink that orange stuff and then after 1 hour they drew one tube again and then another tube after another hour passed.

If you've had that test maybe you know what they did. Or, if you have the medical term that would appear on the results I can look them up that way. Other then that, I really have no idea what any of those things mean.
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Postby jimmylegs » Sat Aug 01, 2009 1:04 pm

hiya LA, that particular test you describe does not sound familiar to me, but it might be a form of schilling test.
the only kind of tests i got were just you give them some blood, and they tell you how much (or say 'we can't detect any')
when i get bloodwork done, 99% of the time my doc would say 'that's normal' but when you get down to it, the normal range is a deceptively comforting-sounding term that does not mean anything close to optimal.
if you can get your hands on a copy of that bloodwork, maybe we could figure out if you're in the 'ms' (or whatever) part of the normal range, or the 'healthy control' part of the normal range.
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