I am learning that besides having neuro TOS, and RSD, the I have a congenital problem with my metabolic actions regarding handling pain management tools. For instance, I have a constant fight of starting a new med, and it works well for a short while, and then I start getting classic allergy symptoms (welts on legs, puffed up eyes and mouth and tongue) and these allergy symptoms can come on lightly, slowly, or, the first take, within 1/2 hour.

What is also a part of this metabolic inability to properly or "normally" filter and use pain drugs, is for instance, since I was a young woman, if I drank alcohol, I vomited EVERY single time, no matter how hard I tried to just drink like everyone else. By the time I was 21, I was already using 12 Step Programs to not drink.

This testing is cutting edge, and there is not an "article" that I can offer for others to read. In fact, these things are being studying in Germany, along with the Ketamine. I do not have enough knowledge to add more now, but you know when I learn something that helps, I post it.

Its the chicken or the egg syndrome. We who have these "allergic" responses can have genetic mutations in methylation pathways via the liver. I had this tested out of pocket and it has saved my life.

I am a slow metabolizer in the P450 CD6 enzyme. With these tests it will come with a list of meds that you should or should not take with the dosage for your doc. It comes with a software that I or my doc can type in all my meds to see if I will react and if there are any contraindications with each med together or separate. Having a P450 CD6 mutation is why I cant take morphine/codeine or most anti-depressants. These tests are now being used by hospitals sometimes or at least when i hand the results over now they know what i am talking about. Five years ago they would say " oh, I quess you cant take that"!

This can also be a mitochondrial mutation. There are 3 centers in So. Calif. UCSD, UCI, UCSF. They can do genetic DNA tests that can pinpoint what is mutated, damaged, or missing in your mitochondrial cells. This is cutting edge and has a huge piece of the puzzle for things like RSD, MS, Fibro, diabetes, etc. which i personally still think sets us up for these syndromes. I will let you know what happens once I start in the center at UCI. I'm doing this for my children.

The genetic counselor asked several questions and one was does anyone in your maternal side have droopy eyelids. I was amazed because my mental picture of my grandmother was her holding her eyelids open with her finger. My mom had it and I have some too. She said that was a marker for mito disease. Ha, I thought it was just getting old LOL! I told her about TOS/RSD/Fibro and she said it is all mito mutations. Environmental factors are huge as well in damaging the mito. She stated that you can be pre-disposed and then WHAM a trigger can start the cascade.

She stated they think that they can correct these diseases in the next 5-10 years God willing.

You are talking on the edge of science, and do not understand it all. I do know that a droopy eyelid is a signal of myasthenia gravis, which fits my model well. I have TOS with RSD, then diabetes, and then that threw my body into thrush since I am bedridden. It all gets so complicated. But for 6 years I lived with unbearable, horrific pain. Then I met this doctor, and he asked me some digestion and allergy question. So he gave me a pain relief that hit the mark. I am not a happy camper, but I am not in that horror movie that I felt I stepped into.

I thank you for your comments, and we need to dig further than EMG tests, because they just aren't hitting the marks, and it's like having a broken foot, and the doctor keep giving you cough medicine and tell you that you have a cold!

UH - it gets hard. But that book "My Imaginary Ilness" by Chloe G.K. Atkins really helped me in many ways.

Bump up. Copyright 2010 - 2012

Bump up.

I have found that nerve blocks anywhere but my C-5 have been a waste. The
C-5 spot, on the other hand, gave me so much relief, for a short period of time (one month.)

God bless.