believe progressing neuropathy not b12 deficiency

[skypeople]

I was given B12 deficiency diagnosis after many tests including results:  297 B-12; abnormal visual evoked test and axonal sensory-motor being judged in 1999 as moderate to severe.  I continue to lose more function as time goes on:  my symptoms are:  the neuropathy was orginally in feet and now feet and lower legs; arms and hands;  lost all body hair; weakness, do not sweat no matter how hot, in fact, problem is that I overheat rapidly (body temperature raises 2.5 degrees or more when just walking around; feet, hands and face get brick red when I am outside even in cooler weather.  but I also have cold spells where my temperature will drop down to 94,5 where I start feeling like I am drugged. Plus have bladder incontience, severe constipaton or else diahrrea,   I have also been diagnosed with: FMS, hypothyroid, overactive bladder, high blood pressure and choloestoral, frequent migrraines and have trouble controlling my bladder (frequent leakage) and same with bowels. .

My mother, who will be 81 in a couple of months was diagnosed with the same type of neuropathy that I have and she now has to use walker inside her home as her legs are so weak.  Her onset was more rapid and would say in the past five years for her; and I started out by after first head injury in 1995.

I am concerned as my onset has been a slow progressive neurological problem?  I am limited as to disabled veteran so it has to be to a VA, which I find that most do not want to refer me back to neurologist.  The last time I saw a neurologist was in 2004 who initial exam was only fifteen minutes and he offered to give me surgery for the neurpathy in my feet, which I declined.  I do not have diabetis


is this a possible hereditary problem since I would assume not usual for mother-daughter to have same kind of symtpoms and test results?

what is your advice as to what I can do to try to figure out what is causing my problems that includes the newest ones which is no longer sweating, less control on bladder, and this is affecting my hands the most; cannot even use a nail clipper as cannot get it to work for me.

[sunshine2008]

I will be going back on the injections..... but I would like to do the schillings test to find out why I am b-12 deficient. The only thing that really sticks out when I am doing my research is lack of the intrinisc factor, because none of the other causes apply to me. GOOD LUCK TO YOU TOO ! I hope you get the answers you are looking for :)

[skypeople]

It has been a proven fact that one can not overdose on B-12 and so believe that if you were deficient once, that it is wise to continue the shots.  There are some doctors who believe that oral B-12 will work but unless they found out why you were low; then I would continue with shots.  There are some tests to see if you actually absorb B-12 in your stomach or not; but I am going to continue (and suggest that it would not hurt that you do) the shots.   It is better to be safe then sorry as so many things can happen if you do get really low.  B-12 deficiency can cause all kinds of problems such as mental changes from not being able to think well, mood problems; and even damage to the nerves in your spinal cord:  the worst I believe in that is called:  sub-acute combined degeneration of the spinal cord which can cause nerve damage.  If the problem continues and no relief, then can cause permanent damage.  If you have trouble getting from doctor then you can order online at health food stores as believe you do not need to have prescription for it.  good luck and stay healthy

[sunshine2008]

I actually got my diagnosis from an endocrinologist when she discovered I have PCOS and B-12 deficiency. I stop taking my injections for quite sometime now, instead I have tried some herbal supplements, but I am going to go see my endo soon to start back the injections.

[skypeople]

They started me out with three in one week, then several in next following weeks and then on to one a month which I still take.  Yes I actually had the diagnosis of: sub-acute combined degeneration of spinal cord and of course, result of not having enough B-12 to causes permanent damage.  But problem has continued to progress with little to no follow up from VA except for shots.  How about you?  You are pretty young to have B-12 deficiency!!!

[sunshine2008]

I am sorry for what you are going through. I am an 18 y/o female and I also have B-12 deficiency...I was just wondering if you are taking B-12 shots or pills? And have you got a diagnosis of pernicious anemia or B 12 deficiency.

[skypeople]

I posted this morning and forgot to mention a couple of things:  starting late last year, I started getting really bizarre symptoms.  It occurs quite a lot during colder weather and not so in summer.  I do have, as I said before axonal sensory-motor neruopathy.  When I sit for a little bit and get up to wak; I get the sensation that I am stepping into cool water.  I looked on the floor and there is no water or liquid of any kind.  In the summer my feet remain warm or hot (if I have been on them for a while.  The progress of the nerve problem use to be far apart and now I experience something new within matter of months, weeks, even days.