Just Venting

[Darlene]

i just got back from my rheumatology appointment. he said i had mild nerve damage and wrote me out a script for vitamin b complex. he said b vitamins heal the nerves. he also knows i am also being treated for dysautonomia & mcad. he said that if i would exercise and lose weight i could get rid of half of my meds. really!? the only way i am going to be able to quit taking half my meds is if i am cured from either dysautonomia or mcad... and , neither one has a cure.

then, i wanted my daughter to go with me to my appointment because even though i may feel ok before i leave, sometimes it just hits me out of know where and i feel dizzy and lightheaded. i don't like to be driving, or alone in a car by myself when this happens. after my appointment, my daughter and i went to my parents. my daughter said she didn't gt her homework done. my parents were mad that made her go with me. they know i am sick.
dr's (that have no clue what dysautonomia and mcad even is), my family... they just don't get it.

oh, if you have mild nerve damage, shouldn't the dr. figure out what caused the nerve damage, and treat that... instead of trying to fix it with b vitamins.

[Katybug]

Yeah...I totally get the weight thing. I was being told I need to watch my weight gain by 3 of my docs. I went on. 1200 calorie lifestyle, exercised as much as I can with pots and mcas and eds. Didn't drop a pound. Last month I found some info about Depakote causing severe weight gain or preventing weight loss. Asked neuro about it and he was like "of course that's the weight issue...doesn't everybody know that?" I wish he would tell his colleagues this little fun fact. So if I want to loose weight I have to choose between having increased migraines (including abdominal migraines) or just being fat and staying on this Med.

[Darlene]

i was thin growing up, 138 lbs... i got up to 172 in my late 20's... about 3 months after lexapro and metoprolol i went up to 216. i don't eat much at all.

[Tobiano]

How frustrating! It's so hard to deal with a 'system' that doesn't get it. It's hard enough to not feel well ... then add on a bunch of unhelpful doctors. I don't have any words of wisdom unfortunately. Hang in there.

[Darlene]

and unhelpful family. i home school my daughter. it takes maybe 5 or 6 hrs. it doesnt matter if she does her work from 7 am to noon, from noon to 5. i don't understand why my parents were upset i made her go with me to my dr.'s appointment. she has gotten her homework done today.

i don't get why they think i can drive by myself. i did before i became sick, but things are different now.

i hate feeling alone...

[Tachy Phlegming]

I would guess he should check your B12 levels (there are more sophisticated tests as well that can be run to check this, see below) and maybe folate.

B deficiency can be a cause of neuropathy. I imagine that's his theory.

The most common other cause is diabetes.

If you think it might be something else, good luck! I'd bet no (or almost no) doctor wants to bother.

I imagine not thinking you have diabetes and not wanting to bother, he just decided to try B vitamins. But really, it should be checked. It doesn't randomly help nerves if that's not your problem.

http://voices.yahoo.com/two-types-vitamins-may-help-peripheral-4681261.html?cat=70

I guess, like you, I'd kind of doubt that's what bugging most people on here but I've seen some people write about the importance of checking B12, homocysteine, and MMA, in line with this type of article.

http://www.aafp.org/afp/2003/0301/p979.html

Here is another article which may be of interest:

http://circ.ahajournals.org/content/111/19/e289.full

[Darlene]

thanks for the info tachy.