Brennie:
I’ve had polyneuropathy for years and yes it progresses. I had an EMG and nerve conduction test by my neurologist and it is ulnar nerve damage, he thought it was caused by the nodules and that there is nothing they can do to help it surgically because there is no way of knowing exactly which area of nodules on my arms to target and I have so many bb-sized nodules that they probably number in the 100’s or 1000’s in each arm (and the same number throughout my body, legs, buttocks and near my spine). I’ve been told by many doctors of all specialties that it would be too dangerous to try to operate to remove any near my spine and that they would only be willing to do another biopsy. I’ve had biopsies done in 2002 or 2003 and I have nerve damage and multiple nodules have formed in the area of my muscle biopsy as well as in the two locations they removed nodules. And I have enough nerve damage from the neuropathy in my extremities that I just don’t see have an unnecessary surgery. I
know a lot of people have some removed but for me I have a strong autoimmune reaction and go into a long really bad flare on any invasive procedure, even a colonoscopy, and it doesn’t heal well plus I’ve been essentially bedridden for almost a year when I have anything invasive like that.
Not trying to scare anyone, but yes, mine “started” in late 2002 or early 2003, when I noticed the nodules forming in my arms and I wore a size 7. Now I eat very healthy foods, raw vegies, fruit, etc. and yet I’ve gained over 100 pounds and wear a 22. I no longer even recognize myself. No matter what I do, I never can lose any weight. I can have the flu and not eat for a week and still gain weight because they are still spreading and forming in old trauma areas (traumas from years ago, even when I was a child) and my body seems to be attacking itself in weakened areas.
I’ve been to Mayo, every type of specialist you can find, even an oncologist for possible treatments and all, even the ones who treated me with respect which many didn’t, have said they have no suggestions for treatment for me. My pcp is a specialist in internal medicine so I go to him for everything now instead of seeing a pain managment specialist (they gave up and had nothing else they could suggest that my pcp couldn’t help me with and told me to save my money and only go to 1 doctor), a neurologist and rheumatologist.
Good luck to you all and hugs to all,
I don’t post much b/c I have problems typing with the neuropathy.
Benita