Update on what has been going on
 

I hope everyone has had a good holiday season. I have not been on here for a while but wanted to give an update. I have been formally diagnosed with "Axonal Sensory-motor Bilateral Peripheral Polyneuropathy that is progressive. I was advised that I don't have Lupus, Wilson's Disease, Celiac's Disease and not a diabetic. Stated that he does not know the cause & can only treat the symptoms. I have since started having gross motor movement issues mostly in my legs and lower arms but have had it occur all over my body twice. My doctor has added a muscle relaxer, Metformin and B12 shots. My sugar is borderline & by B12 was averaging 274 and they want it over 400. I hope that the shots every 2 weeks start to help. I have had 3 shots but have not noticed any change. I have an appointment at the MAYO Clinic in Scottsdale at the end of January and hope that I can get a cause to slow down or stop the progression.

Does anyone have this type of diagnosis or symptoms? I have had to quit work and have found that the trimmers have lessened but are still there. Any advise welcomed.

I'm not sure how idiopathic your situation is--
 

--with B12 levels that low; certainly low B12 can cause a whole host of neuromuscular symptoms.

Really do peruse our B12 thread if you have not already done so; one of the most important things to learn there is that daily oral megadosing in the 1000mcg-5000mcg range has proven just as effective as B12 injections, if not more so, in combatting the deficiency (and has the advantage of keeping B12 levels in the serum much more constant--the idea is to passively absorb 1% to 2% of the large dose, enough to start to rebuild stores and provide enough circulating cobalamin for the body to use in repair).

Methylcobalamin and/or adenosylcobalamin forms are preferable to commercial cyanocobalamin forms in that they are already in more usable form (e.g., they don't have to jump through methylation hoops in the body before being usable).

The B12 thread is here:

http://neurotalk.psychcentral.com/thread85103.html

Borderline diabetes is enough to cause PN in some people.

I would ask for the DNA testing for MTHFR. If you have mutations with the methylation system, you will need methylated B12 and methylfolate to bypass that error.

We are having posters here testing positive for this, so I would have it done.

For now it would be a good idea to eliminate sugar and excessive carbs from your diet. Going Gluten Free may help too....as those with gluten issues may present with nerve damage.

Hit it from all sides
 

The change I felt as my b-12 got better was some increase in leg strength. It was not fast and or dramatic. Sorry,I know you dont want to hear that. Something that is good news, I don't feel that your DX has to be progressive. I have come up from using a walker to free walking and have close to the same DX. Hope your appt in January brings help. Ken in Texas.P.S. I am diabetic and if you can prevent getting it, please do so. It is a disease that is hard to get in front of and complicates everything including Neuropathy.

Here is info on B12 facts and for me, my B12 level comes in at about 2000 and I continue with 1000mcg AM and often one close to bedtime.... SO MANY doctors just don't know how much is good or not good etc...we have to be our own doctors so much and even go to support groups and hear other experiences. I've been doing this for a lot of years.

http://neurotalk.psychcentral.com/thread230120.html

Thank you for the B12 Thread. I will take a look at it. I am hoping that I can get some of my leg strength back but I am finding that the trimmers are the worst. I hope that once I bring my levels up they will not be as frequent.

Thank you. Gaining any leg strength will be welcomed. I have had 3 injections but have not noticed any change. I am still very tired and require at least 1 nap a day and resting a lot. Have you needed to rest a lot? I have found that I have to rest or nap every day.

Thank you MrsD. I talked to my Dr about the DNA testing and he said that I don't have any of the markers so it doesn't warrant me having the DNA test done but I will talk to him again and press the issues to have it done. I was tested and don't have a gluten allergy but I am cutting carbs as well as sugar to try to keep my sugar level down.

100yd wonder
 

Yes I need to rest my legs after I go to Wal-Mart and buy one item. With the legs giving out, lying down leads to a nap also. We here adhere to the concept of exercizing to tolerance. Do as much as you can do because that may help nerve pathways to reroute or heal or whatever they do. My muscles do not respond to weight training so any increase I have had is due to nerve regrowth and not being deficient of b-12. Good Luck Ken in Texas.

What markers?

You already had low B12... that is one sign pointing to MTHFR problems.

I suspect your doctor doesn't know how to interpret the MTHFR testing...so hides behind medical jargon.

You can get the testing yourself at 23andme and other OTC online DNA labs. You will have to interpret the results yourself, but many here can help you with that.