Well it's been 3 months and today he had his visit. She took some blood and is running some tests.

She also made him walk a straight line, do some balancing stuff and said "the IVIG is working, you can now walk a straight line". He really couldn't do this the last time. She is also reducing the IVIG from two times a month to one time a month. She says he's improving.

They took his blood pressure and it was very low. It was 80/44. They took it in each arm. It was different each time. We are also going through a heat wave and he never uses any salt, so I gathered that his sodium level might have been depleted ?????? Maybe???? He was fine when he got home and I just made him a nice protein shake. He feels fine.

Oh, she offered him a new PN drug (he forgot the name). He declined. He said "well, my wife has neuropathy, and she takes megadoses of Methyl B-12". And the doctor said "she should not be taking megadoses of Methyl B-12, it's no good for anyone". He then said "but she's better". And the doctor said "well, everybody's neuropathy is different". She said "any B-12 reading over 500 is fine"

She is running all kinds of blood tests on him including B-12. He asked if her office could mail him his tests results and she said "no, you have to pick them up".

Wow, times have sure changed.

Anyway, Alan wants to start taking Methyl B-12. He doesn't want to take any pain meds for his pn and he hasn't for a few years. His pn is worse when he lays down or sits down but sometimes it's not as bad as other times.

Do any of you think he should start taking the Methyl B-12??

Thanks much.

Melody

Great news that the IVIG is helping! As far as should he take the B12, sounds like it couldn't hurt. I take metanx and believe it has helped me...from what I know of the metanx it's a bit like taking the B12. My vote is for Alan to try it and see if he finds any relief.

Melody,
This is wonderful! I'm so glad it's working for Alan and I hope it continues to do so.

Sure wish I knew what that new PN drug was. I haven't heard of any. Maybe you could ask when you see her again.

Billye

When I tried to get Alan to remember, he just said: "what do you think it was, it was like that cymbalta thing". So maybe there's a new anti-seizure med out there and they are trying it on PN patients?? maybe???

mel

for ALAN!

I just wonder if the neuro or Alan got mixed up about B-12 and B-6 tho. B-6 while a needed vitamin, can become toxic. B-12 cannot, what isn't used of B-12 goes essentially rite thru you. B-6 accumulates and doesn't.

A way to get around the 'picking up the test thing' and, at times paying for copies [large institutions tend to do that] is ask that copies be sent to Dr Fred, Then ask Dr Fred for copies... That way all the KEY people get copies [especially US the patients!]. One sometimes has to be circuitious, or devious to get what we not only want, but really should HAVE!

Worth a try, I'd think.

I'd do a jig of joy for Alan, but, you know me, I'd probably fall down and break something new... In all likelihood in a new place -sorry, no thank you.

Joy on the good news ! - j

Come on give Alan a hug and a shake. Billye i can't think of anything
new when it comes to PN either. Oh men!!! Dalek that was funny,and
looks very familer. Drs get paided more and come out in a heat wave
to get your test results. Minds on computer disks i guess if you don't
like them you can play frisbee. Been thinking of all the folks in Tx,OK,
Ca.. Hope everyone is well. Alan Sue

Hi all:

I told Alan to tell her to send the copies to Dr. Fred. He said: Oh, the next time I go, I'll do that". He hates to make phone calls.

And how could she have mistaken the b-12 for the other b- vitamins. Alan says "my wife takes mega doses of this b-12 methyl stuff and she said "oh, methylcobalimin? tell her not to do that, it's not good for her" "People shouldn't take megadoses of this". That's exactly what she said.

But all of you know that Doctors do not take courses in vitamins or minerals. I never expected any physician to say "oh you take methylcobalimin, that's cool". I'd fall down dead if I heard that.

So we just have to prove it to them. Alan wants to take the B-12 methyl. I say "go for it". What do you all think???

Melody

I'l bet she doesn't even know what methylcobalamin is.

Many do get B12 and B6 confused. Very sad.

If I remember correctly, Metanx contains 2000 mcg (2 mg) methylcobalamin, in addition to the extra good kinds of folate and B6.

rose

Actually remember my first neuro cause my b12 was high at 2000 to stop for awhile taking supplments. Then my 2nd neuro I asked and she said there was no harm to b12. Now my levels though are lower at 1500 with more b12 cause the 200 reading I was just taking b complex.
As for your husband I always feel listening to the doc but if you feel the doc is wrong ask another opinion like I did or ask them to clarify why? I think if I would of asked my 1st neuro he would of not given me a reason other then cause its high already so to lower but maybe there would of not been a consequence other then not having perfect numbers. Also its weird how my level went down with more b12 now. Did you get the results yet from your husband? Melody when you met your husband did you both have issues regarding pain?

When I met Alan, he was a 32 year old Private Investigator who was healthy as a horse. He began his journey of PN when he was about 45.

I was also 32 when we met and married. I was not yet a diabetic. I then ate myself into stupidity, developed Type 2 diabetes, and the rest is history.

Actually, we both look much more fit as we hit our 60's. He just turned 60 and I'll be 60 in November.

And this is funny, last night when I ran around the corner to sit on my friend's porch, like I do most nights and the whole block comes out and we BS for the hour or two, well I went on the porch and my 75 year old friend says "now, don't you look sexy?" I was completely dumbfounded. I said "I look sexy?? why do I look sexy??" I looked down. My cleavge was showing. I burst out lauging. It seemed that I grabbed a blouse out of my closet that was all spangles and stuff around the neckline but did not know that when i sat down, my breasts would spill out of this blouse. I never laughed so much in my life.

When you are 59, and somebody tells you that you are sexy, and you absolutely did not leave your house thinking you are sexy, well, to me, that is funny!!!

I guess I have to watch what I put on now.
lol
Mel