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

Welcome to NeuroTalk:

Did you have a MMA test to see if the shots were actually working?

Serum tests do not reveal if you are converting the cyano in the injections to active methylB12.

This is explained in the B12 thread in the stickies on the first page of the forum here.

I'd start with oral methylcobalamin 5mg a day on an empty stomach. This is the active form of B12 and will be passively absorbed in the intestine even when intrinsic factor is not present.

I'd also suggest a transcobalamin test to see if you have that carrier to help move the B12 around. Some labs are just offering it now, and it is rather still new. Low transcobalamin is thought to be genetic also.

There are genetic tests for MTHFR failures ...this methylation pathway is for activating B12 and folic acid into the active methyl versions. If you are not a methylator, you will not have active folate either.

There is a DNA test not requiring a doctor here:
https://www.23andme.com/

My B12 information post has more details:
http://neurotalk.psychcentral.com/thread85103.html

The first post on the B12 thread has a video link... I suggest you watch it first.

Twitching can come from low magnesium, and low blood sugars too. So taking a magnesium supplement like SlowMag twice a day may help that. Up to 70% of people in US are low in magnesium. Testing often does not reveal it either.
SlowMag is affordable at WalMart.

Thanks MrsD,

The video opened my eyes to the number of people that are experiencing some of what I have been going thru for the past 4 years or so. I have felt so alone in this with little sympathy from the local medical community. Most days I just feel like I am going crazy and get mad at myself, cause I can't stop the seizure like twitching I am having and I can't focus and concentrate on much else. I am afraid of having to go back on disability because I can no longer focus and concentrate at the level required of my job, and that is increasing my anxiety as well.

No one has ordered any of the tests you recommended, they just saw my B12 levels rise, medicated me and sent me home. I will see if my primary Care Physician will order the tests you recommended. I assume they can also test for low magnesium at the same time? My blood sugars are always just a touch on the high side, but not diabetic levels.

I have been discussing seeing another neurologist as well, and after seeing the video, may try and schedule an appointment with Shand's Hospital in Gainesville as that is relatively close to where I live.

At one point I was taking the following medications:

Htz 25 mg once per day
Trichor 145 mg once per day
Lipitor 20 mg once per day
Advair 250/50 twice daily - COPD, discovered 12 years after quitting smoking)
cynocobalamin 1cc weekly
Spriva once per day - COPD, discovered 12 years after quitting smoking)
Cerefolin Once Daily - Probably not a good idea based on the video
Requip XL 8 Mg before bed: Initial diagnosis was RLS before finding B-12 def
Gabapentin: 600 Mg 3 times a day
And another bad one: Nexium

I am down to:

Htz 25 mg once per day
Advair 250/50 twice daily
Spriva once per day
Gabpentin 400 Mg 3 times a day. (Just restarted this after over a year without it)
cynocobalamin 1cc weekly
Over the counter 400 mg Folic Acid. (Probably not a good idea after seeing the Video)

Thanks for having this forum to help people who are having an issue that is not well recognized by medical community.


Regards,

Chuck

MrsD,

Plus, I just read one of your earlier posts that indicate contaminants are a big contributor and that military bases are the worst places. I do find it interesting that I lived on military bases most of my life. My father was a career soldier, and then I spent 20 years in the Army myself.

And unfortunately, I also remember running thru the ddt fogs in the neighborhoods on many a summer evening

Probably additional contributors to all of this,

If you can find an integrative doctor like Sally goes to, in your area, that would be best.

Google Integrative doctor and you zip and you might find one.

Taking long term diuretics like your HCTZ depletes several nutrients:

Zinc
Sodium
potassium
magnesium
phosphorus
CoQ-10

Your previous use of a statin would also deplete CoQ-10, so
getting some of that going along with the magnesium would be a good idea. If you eat meat, the zinc may not be super critical yet, but if you want a good one OptiZinc is the easiest to tolerate, and very inexpensive. One a day is all you probably need.

Magnesium blood work only really is useful in the very very low range, and very high range. The middle range doesn't tell much, and will not tell how much is actually in your cells. An integrative doctor can assess your potential for heavy metals and other toxins, as well.

Mrs D and all

Thanks for this site being here.

After almost 5 years of pain and suffering, I am finally starting to see some relief.

The Methyl B-12 seems to doing the trick. My nerve endings seemed to be tingling with joy for almost 4 days after starting taking it.

2 tablets a day and not a single cyno B12 shot. After 3 weeks, I am starting to walk a little more normally and feel like I can get thru the days better. My major twitching and seizure like episodes are almost gone completely.

Haven't started any of the other vitamins, as I wanted to completely isolate the B-12.

Wish I had ran across this site 5 years ago

Thanks

I am relieved for you that you are responding to the methyl form of B12. Keep at it...remember --empty stomach! It will take some time to build back up... months and maybe years!

Once you start to feel better, you need to investigate whether you have that MTHFR mutation. 23andme is offering the DNA test without a prescription for $99.

https://www.23andme.com/

For your magnesium you can do the lotion which is new or epsom salt soaks.
The lotion:
http://www.mortonsalt.com/for-your-h...-epsom-lotion/
This is available at WalMart ($5.98 in first aid section) and online so far at Amazon for a bit more $$.

I use only a quarter's diameter on areas of my skin that are thin, like the wrists, back of hands and inner arms. I also use on my feet sometimes. If you see superficial veins, that is where rubbing it in will get into the blood easier. You can use it anywhere, but where there is muscle and fat, less will get past that area into the blood. It rubs in quickly with no mess, and has NO fragrances either. You might be able to get off that HCTZ if your blood pressure comes down with the magnesium lotion.
It did that for me dramatically. Discuss that with your doctor, before stopping however.

The magnesium and B12 (and also Vit D when you get a chance to have testing) are the first big THREE things to fix. You are wise to wait, to see what else you may need.

B12 fixing...has ups and downs...so if you have a flare, esp with bad weather, don't despair right away. This comes with the healing.