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Heard back from MDA Neuro today

Oct 12, 2009 - 4 comments

I was surprised to hear back from the MDA neuro so quickly.  All my tests are back from last week and hooorrray I don't have MG of Sorgern's, but I already knew that.  I also do not have lactic acidosis.  That was a little surprising to hear my lactic acid levels were normal, but good news.  

Bad news, if it is truly bad news is that my B12 levels are below normal again.  I quit taking the shots several months ago when my follow-up blood tests showed I was back in the very good range.  Well, looks like I'm back where I started and back to the injections.  The neuro didn't speculate why this was happening and when I mentioned if it could be related to MS (he's not an MS neuro), he surprised me by saying that there is anecdotal information that MS and decreased B12 are not uncommon features of MS.  Hmmm.....

He did give me a gentle reminder that I need to get on the schedule for the EMG.  I apologized for procrastinating on it and then he asked if I was nervous about going through it again and suggested giving valium.  Geez,  what does he think of me?  I'm not that big of a drama queen.  I called and am waiting for the scheduler to call back with the appointment time.  Dr. S said he wants to do this before we decide on a muscle biopsy.  Now a muscle biopsy is a different story.  If we have to resort to that, then I will DEFINITELY take a valium thank you very much!!!!

That's it for now.

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739070 tn?1338603402
by rendean, Oct 12, 2009
Glad to hear no MG, lactic acid  or Sjogrens!  The B12 is small potatoes compared to the MG so I'd take the low B12. Actually , I have it too, so that means I'd have to take a double dose ;-).

EMGs are NOT fun but a necessary evil in diagnostics. I personally would have taken the Valium since it's a muscle relaxant as well a drug used for sedation, and then the muscle spasms would be less intense. As for the muscle biopsy, I was lined up for that and was SO glad I didn't have to go through that. I hope you don't either!

Have a good week!


572651 tn?1530999357
by Lulu54, Oct 12, 2009
I'm wondering if taking valium wouldn't somehow interfere with the readings on an emg?  just my mind trying to figure that one out.

But Julie, that is all great news from this appt.  I was holding my breath for you, hoping there would be good news at the end of this.  Yeah, it's about time something good came your way!

Now here's hoping that scheduler calls you back before you change your mind!

be well,

559187 tn?1330782856
by Sarahsmom46, Oct 12, 2009
I was wondering the same thing Lu, regarding the valium affecting the results.  I doubt the doctor would have suggested it if he knew it would affect the results.  Hmmm....I'll bring it up though.

The neuro told me that we are not done yet and that he wanted to rule out the most obvious possibilities first.  I am going to push for any further tests be done on the blood as much as possible to avoid a muscle biopsy.  The last time I talked to my doctor at NIH, he said that there is so much testing they can do on the blood now when looking for metabolic disorders that they only need to resort to muscle biopsies when all else fails.  So, hopefully Ren, I will be able to avoid that too.  I will go through with the EMG though.  

I'm not too worried about the B12 either.  Looks like I will have to be on supplements for life as stopping them just put me back where I started.   I do think we need to treat it though.  I don't want any permanent damage

Thanks for your responses.  I'll let you guys know how this turns out.  Hopefully good!

751951 tn?1406632863
by PastorDan, Oct 12, 2009
Julie, my late mother-in-law would have fed you pot roast two or three times a week to get your B12 up there.  Poor dear always looked so white, but the docs wouldn't do any more than advise her to take a multivitamin and eat beef.  She had pernicious anemia all her life, but she got by fine.  Took Inderal for essential tremor, though.  I think that was about it until she got older.  What am I saying?  She was 66 when I met her, G-d rest her soul.  Lost her at 85 in '01, ten months after her hubby, who was 4 days shy of 90.


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