Tineewolf and Ladybud,
I thank you both very much for taking the time to read my post and provide some comments and suggestions. It is very very much appreciated.
I plan to do the biopsy just because it is now scheduled and will at least provide an answer to one question one way or another. It is frustrating as the doctors just seem to shuttle you from one location to another trying random things based on 'their' work area. Nobody seems to try and pull the different tests/areas into one clear picture for an individual. I will seek further neurologist specialists with the biopsy results.
I will check on the MS tests that have been done but think they were normal. Thank you for that suggestions and comment on your fiance's experience. I remember being very young a doctor said I had MS (scared me a lot and I may have been 8 or 10), but then next doctor said no my spine was fine. I think my body and spine curve are not 100% normal but maybe only slightly off. I always had good coordination etc but slowly degenerating with this leg weakness thing. I will followup with this. I do have a 'sunken chest' and very very small calf muscles for somebody 6'4".
Regarding Fibromyalgia I have always had a high threshold for pain and not tender in any of the specific spots listed as common. The only 'symptom' I can see in common with Fibromyalfia (from various wiki sites) is limb weakness. I am not sure how they can specifically test for Fibromyalfia but will ask, I think they will say although I have a sever limb weakness I don't have other symptoms so I don't have that (my guess).
Thank you for your suggestions to explore more neuro tests. I was interested in what 'areas' people think I should look for this problem or specialists in (if I can't get a full team to do an overall evaluation). The EMG tests were normal and if the biopsy is normal then I can force more tests in other areas. I am very familiar w/ La Jolla Scripps Clinic and am willing to travel to specialist on the mainland to hopefully evaulate the 'overall' situation as a team. But I was told maybe USF is a potential place if this is a neurology thing? I wish I had followed this up more when I actually lived near Scripps. I can travel but don't have unlimited funds and worried about which part insurance will cover but I am willing to spend what I have of course.
I am not clear if CK enzymes are being measured in the blood in my quarterly tests, but now I can ask
I do not regularly have any back pain and when I do it is more muscle spasm related after I work (and maybe pull a muscle) than from the 'disc' area. Regardless I am VERY interested in this arterio-venous malformations potentially wrapping around a nerve. That may be along the lines of what I am thinking has been happening over the years.
Thank you both for your comments, again I can not tell you how appreciative I am of you taking the time to type your feedback to my issue.