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lydia

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So I saw my GP today and shared with him how the hamstring tightness/stiffness/soreness is so improved and asked if he thought it could be a result of the supplements. He said sure! He adjusted my dosages a bit. So I am optimistic. Since this is the "treatment" for a mitochondrial disorder and it may very well be the cause of my improvement, he suggested delaying the mito-study and see what happens with the new dosages. I didn't ask what the mito-study involved (there was some "protocol" to follow), but he did say, "...can put off that muscle biopsy for now..." so I guess I have been spared that little invasive poke for the time being. I guess I am ok with not knowing for sure; heck if the supplements work then I can manage.

I shared with him about the two falls, the weird buzzing sensations, the continued slurring, the belt-like tight thing around the ribs, the numb right side of mouth/lips, and the drooling... He wants me to go back to neuro #1 (the inattentive woman who makes mistakes in her write-ups), while I was hoping for neuro#2 (the gorgeous guy). He mentioned MS, another MRI, blahblahblah.

He also brought up the cerebral small vessel disease that was suggested by last summer's scan and the possibilities of stroke. But we ended up not talking about this very much at all because I guess I got a little weirded out (wouldn't you if someone said brain and disease in the same sentence?) because he then oh so tactfully tried to tell me that I seemed a little stressed and that perhaps I should "talk to someone". At that point I was trying to determine if he meant stress was causing my symptoms (don't you dare go there!) or if my symptoms were causing me stress (duh!). He made a big point of asking me if anything he said offended me during my visit (shouldn't have complained so much about 1st neuro's patronizing behavior :grin:).

He did NOT notice my now 24 pound weight loss and I didn't bring it up (even though the nurse said, "oh you are doing so good!"). If that is stress or depression at work (as neuro #2 suggested when it was only a 10 lb loss in December) then I am all for it! But still....a 15% loss in three-four months without effort? Shouldn't that merit some attention?

These are the supplements I take:

Acetyl L-carnitine with alpha lipoic acid
CoQ-10
Creatine
(along with vitamin D and B12)

Anyone else here taking them?

Lydia
 

wheeler641

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I take all kinds of supplements, I take B12, a B complex, magnesium, potassium and a prescription vitamin D of 50,000, which I only take once a week. I also take a supplement called Cal-Mag Citrate, my daughter sent it to me to try , it is a powder and you mix it with either water or you could put it in the blender with whatever you want and it covers up the taste. Kind of tastes like Alka-Seltzer with just water. I seem to be feeling better since starting all the supplements, at least they do not make my symptoms any worse. I am glad you are feeling better. Was the doctor concerned at all about your weight loss? margaret
 

rocmg

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hi all... have any of you explored the idea of taking vitamins intravenously or intramuscularly? I'm talking to my mum's GP about those possibilities tomorrow morning since i'm still at a loss as to what vitamins work best for good results, etc.
 

jimmybob

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Feb 3, 2009
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hi all... have any of you explored the idea of taking vitamins intravenously or intramuscularly? I'm talking to my mum's GP about those possibilities tomorrow morning since i'm still at a loss as to what vitamins work best for good results, etc.

the only vitamin, that i know of, given IM is B-12. Vitamins are mostly water soluable, and what isn't absorbed is excreted in urine. Four key vitamins are fat soluable, vitamins A, D, E, and K. If you take these vitamins without eating food containing at least 5-8 grams of fat, the vitamins will not be absorbed and will be excreted. There is no conclusive clinical evidence that vitamin supplements slows progression or provides clinical benefit.
 

Zaphoon

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Lydia,

Your weight loss should have gotten some attention, in my opinion. I hope the docs can pin down what this is that has been working on you!

Zaphoon
 

violetivy

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Hi,
I get that weird tightness around my ribs too, making it hard to breathe. I get it around my neck too with twitching. It's quite unnerving to say the least so I know what you're going through. Does anyone know what causes this?
My EMG was clean today, basically, so I'm going to wait on MRI for now. Have you seen a rheum? My hamstring cramping has eased up a little too - I take prescription Vit. D, and then B-12, magnesium, and a a muti.
I think my next step is a rheum.

Sounds like you're Dr. are really on it though!
 
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