[echoes long ago]

I wish i could post this in the improvement is possible thread but the news was not good on my last emg/ncv of my legs which i had done recently. Since my first emg/ncv in 2003 which showed mild to moderate damage in my legs to one in 2004 which showed moderate to severe to one in 2006 which showed severe damage to this one in 8/08 which shows worsening of damage since 2006. I havent got the report yet but the doctor who did it told me that several areas that had a slight signal in 2006 have no signal now.

I have been taking b12, b1 then benfotiamine, multi b, multi vitamin, niacin, and fish oil since 2003 and have added coq10, r lipoic acid, aceytyl L carnitine, fish oil, vitamin D and calcium over the years.

Every test run except the emg/ncs has come back negative including spinal tap, mri's, vascular study, and innumerable blood tests including test panels for autoimmune and paraneoplastic causes. A1c, 2 and 4 hour glucose tolerance test as well as innumerable 12 hour tests.

It looks like im stuck with this for life, which i kind of figured anyway.

[dahlek]

Or other more choice words? [Don't know about you, but I've got LOTS of 'em!]

It IS discouraging in many ways, but I suspect that you've sort of known it in your own mind for a while anyhow? Also, I'm gonna throw out a 'hated phrase' here...It could have been worse? I understand because I wake up every single day with the fear that it could be worse.

DO keep in mind that YOU have done all you could to help your body heal/recover and get better. Maybe the dice were already thrown as they say and just go with it?

All else I can urge you to do is look at your tests? Take a look at all the #'s that are just under or over the ideal norms. Sometimes you can find a subtle pattern there - I know I found such in regard to metabolic stuff and was able to beat the 'game' before it was an issue. I've had some blood abnormalities recently and I am 'teasing' all docs mercilessly that they never pay attention to a # unless it's got the *** after it! DUH?

I'll be here any time for you and I DO have this type of tee-shirt! Let's go make lemonade or something? special s to you for sure - j

[Zayne]

HJ has pn started on your hands as well? Hoping not.

[echoes long ago]

yes it has been in my hands since at least 2003. i haved sewed fingers to what i was sewing and had no idea ive done it until i see the blood. ive also
had blood gas tests drawn from my wrist without flinching. it is usually a somewhat painful procedure. i also quite often drop things.

[Brian]

I really wish the results would have been better for you, i know your been trying so hard to find answers for such a long time, i hope your luck changes in the near future.
all the best
Brian

[echoes long ago]

I got a copy of the report today and the conclusion is that the study is abnormal and highly suggestive of generalized predominantly axonal polyneuropathy of a severe degree with chronic axonal degeneration and that it has worsened since 2006. The interesting part to me is the sentance that says needle emg studies of selected muscles of the legs show chronic reinnervation in the distal leg muscles tested. Which means to me that the process of damage is still ongoing, whatever is the mechanism of damage has not abated in over 7 years.