I don't if this is the right thread, but I have a question for you Laura regarding your diagnosis you got at the stem cell clinic (If I don't remember it incorrectly) and the meds you got that you later switched to some less toxic:
Did they say you have neuropathy due to hypersensitivity to insulin? And that is the reason to (maybe all?) you other problems too? Did they performs any specific tests to specify what kind neuropathy? Because there are all kinds of neuropathy, both cause and expression in the nervous system so to speak, myelin and axiom damage, conductivity problems, central and peripheral symptoms, infection and genetic related and a lot more...
I had nerve conduction tests and it was pretty bad in the legs; worse in the left leg than the right. It was pretty clear that there was insulin RESISTANCE and thus, hyperinsulinism, and the assumption was that this was part of the cause. The other theory was low back injury. As it turns out, both were more or less correct, but there is actually more.
After doing the DNA tests and getting the results back and learning that I am a carrier of a gene mutation that is involved with folding proteins, it seems that this could play a root cause role in part of the issue. The proteins in question are involved in the manufacturing of hormones. I also am very Vit D deficient and Vit D is a hormone like substance. I have low thyroid and insulin problems, both hormones. So, even if I don't have a specific condition due to my mutation interacting with any other mutation, it could be responsible for less efficient hormone manufacture, thus partly responsible for the insulin problems which lead to neuropathy.
The second big revelation after having an MRI done here, subsequent to the stem cell treatment, is the prolapsed disc between L5 and S1, very low back. Since it is squashed more to the left than the right, that would explain the neuropathy being more on that side than on the right. In other words, the neuropathy appears to be both chemical and mechanical.
Now, as to whether the gene defect has a more general effect on the nervous system, I don't know for sure, but studies of people who have it along with other "activating" defects tend to suggest that it can affect the whole show. I have a very high tolerance for pain. I've had doctors amazed that I have been able to continue to function with some of the injuries I have suffered. But that's not neuropathy, it's just a manifestation of the general nervous system.
One thing I should mention is that the gene mutation is supposed to have originated in Denmark/Southern Sweden though it has spread to areas where Vikings migrated. Being a carrier means you don't have anything full-blown, but the truth is, it is so rare they don't really know what carrier status implies. It's called PMM2-CDG1 on chromosome 16.
The specific Vitamin B combo I am taking has really helped: Metanx. Metanx - Wikipedia
The Victoza helped to get the insulin under control and I now only take a very small dose daily.
Thyroid medication: Armour whole thyroid, 60 mg once a day along with a drop or two of iodine.
I take about 2.5 grams of Vit. C daily (away from the iodine).
Magnesium, Potassium at bedtime.
A giant dose of Vit D once every two weeks.
Autohemotherapy about once a week.
And that seems to be what really helps. I've stripped down my supplements a lot. I don't take Vit E anymore after learning that I don't process it thanks to my genes; in fact, it causes me inflammation. That was a big discovery and once I stopped taking it, a lot of things got better.
I also got really strict about not eating eggs or having any dairy, cutting out chicken, and basically, everything that I tested sensitive to. Every day I improve a bit and I'm almost back in fighting shape. Just a little bit more to go with fixing this back problem via Quinton and I should be right as rain.