I am 59 YO male.

After being in severe pain and various degrees of twitching for over a year and seeing various types of doctors, I was diagnosed with PN. Needless to say, I had reported being tired all the time to my Family Care DR, but they just thought it was related to long work hours.

After finally being referred to a Neurologist, I was told that I am not correctly absorbing the B12 via my stomach. This was due to a lack of "Intrinsic Factor" in my stomach. I was at 160 when they finally checked my B12. I have been taking a shot a week for the past 2 years. And while the B12 levels have been over the high range (+2000) for most of this time, I feel that my symptoms are getting worse.

When I was first diagnosed, I was on disability for 6 months.

I started a daily exercise plan that included riding a stationary bike for warm-up and then doing a series of stretches. This worked for me for almost 2 years. Then suddenly the exercise seemed to start making my condition worse. I have had to eliminate the exercise completely. Someone suggested that maybe I was overdoing the exercise, but the amount of exercise was the same for almost 2 years, with great result. I was even back to playing golf to a 14 Handicap.

I also went back to work. That was a little over 2 years ago. I actually thought I had it beat. Stupid, right?

Then about 3 months ago, I started the twitching again.

I went back to the Neurologist, who had the EMG and NCG repeated. Now he tells me that I have Short Fiber PN. And it also seems that once the Neurologist made the diagnosis, the attitude has been one of distance. "I can't fix PN, so take the meds and do the best you can". That seems to be the recent attitude.

I am still working and have a very stressful job that seems to make the conditions worse. I do computer work for one of the largest banks in the world.

At this point I would like to keep working, but am starting to feel that may not be possible. Luckily, I have the ability to work from home. I'm afraid I would scare my co-workers if they saw the twitching during the day.

While I am sure that no everyone has the same behavior, I have not heard anyone else talking about this same kind of twitching (almost seizure looking) behavior from PN.

And from what I have read, this will likely to continue to get worse as I get older?

No my oldest son (34) is down to the low 200's of B12 and both of my sisters (ages 60 and 56) are starting to exhibit some of the same symptoms I have. I have advised them to seek medical treatment for the deficiency. Seems my family has some genetic disorder that prevents absorption. But the Doctor no longer seems interested in pursuing further tests, genetic or otherwise.

Any advise anyone can give me would be appreciated.

Thanks