Thank you so much for the speedy and informative response!
My B12, Vit E, and Copper levels blood tests should be back any time now.
Interestingly, I had gotten some Acetly L Carnitine for my husband after his TBI and have taken it sporadically for my brain fog. I have 400 mg with 200 mg ALA formula. How much makes 2 grams?
I do recall in the discussion with my neurosurgeon his comment that one concern would be my putting more metal in my body - I already had 2 titanium plates from cervical fusions, and the wiring from my thymectomy also titanium. I need to add a question - can they remove this coil?
I'll be putting a call in to my surgeon 1st thing in the a.m. with that question.
I have to leave you with an ironic, once funny, item. After I got home from the coiling and was having problems I glanced at the newspaper. There is a little "cartoon" thing called Pot Shots by Ashleigh Brilliant. They are one-liner statements concerning life and living. The one that day was - MY EFFORTS TO REMAIN HEALTHY - are gradually killing me! I cut that out right away, having recognized the irony immediately.
I refuse to just lay down with this - if I can just impress on the med community in a rational way how urgent my gut tells me this is.
Quote:
Originally Posted by mrsD
Welcome, to the PN forum, Becky.
I am doing some searching on your question about platinum leaching and PN. This is going to take some time.
But for now, I have a few comments:
1) There is research on platinum containing drugs used for chemo in some cancers. These drugs cause PN, and the agent recommended to block this/prevent this/or minimize this is
acetyl-l-carnitine. This amino acid is also used for other toxic drug reactions which cause nerve damage.
So I would start using this ASAP... at least 2 grams a day.
2) Some drugs are used to block platinum toxicity... they are called sodium channel blockers...but all of them have side effects that are considerable. Discussion with a neurologist about this would be a good idea to see if it is a viable solution for you.
3) demyelination also occurs with some nutrient deficiencies.
I see you have a history of possible MS diagnosis. So that indicates to me you may have a significant problem with
B12/B6/folate. There is a new high dose RX only vitamin with all 3 in it, which was designed for neuropathic patients.
It is called Metanx. You can ask your doctor for this.
OR you can request a B12 test to see if you are low first.
If you have a genetic problem with methylation, and have had this for years...then your nervous system will fail eventually.
This is called the MTHFR mutation and is quite common. One sign of problems with it is elevated homocysteine, which can affect the retina of the eye.
The vitamins in Metanx are available OTC as well separately.
http://www.pamlab.com/Products,Metanx
Some people report autoimmune reactions to implants. Knee and hip replacements can be triggers for an autoimmune attack for those with genetic sensitivity.
I can understand that you are frantic. I would be too.
I will look around for you and come back to this post when I find something useful that I haven't shared already. I won't be responding to the post you made at MG. It will be here. |