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One neuro down, one to go...

Oct 20, 2009 - 5 comments

I saw my MS neuro today.  I don't know why I was worried about this appointment because his nurse told me that he would be ok with me seeing another doctor at the MDA clinic for a neruromuscular eval.  And, she was right.  He said that the two academic hospital neruo clinics are not that egotistical that they want to impede a patient getting the best care possible and even collaborate on a patient like me when needed.  He was happy I was getting my eval by this particular doctor as well.  He was concerned about my diminishing lung function tests and wanted copies of what I brought to show him.  He also wants an update from the MDA neuro and I will certainly give the permission to have the results sent to him.  He said that the decreased lung funtions were not likely related to MS per se as I don't have a brainstem lesion.  So, that was good to let him know what we were doing and his being on board with it.

He even sat with me to fill out the paperwork for a disability placard.  I had a temp for 6 months but let it lapse in hopes that my mobility would get better.  That was very nice of him.

We talked about the oral drug coming out and he mentioned that having a low lymphocyte seems to be one of the side effects.  I told him about my chronic lypmphopenia and he said he would like to see my previous results.  Said that I may not be a candidate for this drug if my lymph count is not good.  He also wondered how I could have an autoimmune problem with a low count.  Perplexing.  

We aslo talked about the H1N1 flu vaccine.  He said he wants his patients to wait 4-6 weeks so we can see if there are any significant side effects.  He said he was around in the 70s when the vaccine caused neurological side effects.  Whatever, I don't think I will have access to the vaccine in that period of time anyway, so waiting is not a big issue.  He did say that the annual flu shot is not an issue and said to get it.

So, that is over and now all I have on my plate this week is the EMG/NCV.  Yikes.

Comments
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572651 tn?1530999357
by Lulu54, Oct 20, 2009
I'm so glad it went well- you are right that these doctors should know how to share patients!  I got my seasonal flu shot today.  - L

739070 tn?1338603402
by rendean, Oct 20, 2009
Julie,

Glad today's neuro visit went well and that he is onboard to help you and the other neuro figure out what is causing your symptoms.

Thanks for info regarding the H1N1 vaccine. My PT gal asked me today if I was going to get it. She's leery because her best friend got the seasonal flus hot last year and developed transverse myelitis.  She believes it is a CIS for time being but since his mom has MS it's a real concern. It did make me pause and think about the seasonal flu shot momentarily. Glad to hear your MS neuro agrees with the consensus I've heard.

Thursday you will be in my thoughts. Sending comforting, painfree thoughts your way. I dislike EMG/NCVs as well. I endured several over the years as they thought I had a CIDP instead of MS. Wishing you well on your test and as little discomfort as possible.

Ren

648910 tn?1290663083
by saveone, Oct 20, 2009
This is how it should be, doctors working together without the egos in the way.  You are very lucky to have a neuro who appears to be more concerned with your health and is willing to work with the other.  I think this is great.

I got my seasonal back in Sept.  I plan on getting the swine flu shot.  I am like you.  if there are going to be side effects by the time I have access to it.

I have never had an EMG/NCV and from everyone's response....I will be thinking about you.

terry

405614 tn?1329144114
by Fluffysmom, Oct 20, 2009
How...relaxing...to have a doctor happy to have another specialist working with you, being truly concerned about YOU.  Helping out with your disability placard was nice, too.  I miss my Sports and Spine Specialist; he would gladly help out like that.

I appreciate the flu shot info, too.  I've heard that there is some seasonal flu shot available again around here, just have to hunt for it.  The H1N1 won't be available for a while, so it will be easy to wait for that one.  :o)

Tee hee, so you're perplexing; nice to know for such and unusual case as myself!

I've only had a NCV on my right arm, so I don't really know what you'll be going through, but can still wish you the least pain possible, and that the tests pass quickly.  You'll be in my thoughts

Kathy

728313 tn?1260459629
by Lisa_32, Oct 21, 2009
Hey,
Glad you gto some more information, and hoep youa re doing well. i love sending angels out for those in need and even ones that aren't. It's a thing my 7 year old son and I do. he started praying to them and I didn't even teach him about them. but for 3 years now, we talk to our angels every nite. He says he see's them and who am I to say he doesn't.
the school sent home notes about the H1N1, we are nto doing teh kids yet either gald to se ethere are some Dr's saying wait. We are to keep the kids some any kind of cold...

Angels be with you all.
Lisa

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