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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.

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.

Health Update

Oct 11, 2009 - 3 comments

It has been a long, long time since I've done a health update.  A really long time.

I've come down with a cold that now seems to be turning into something else.  I am keeping an eye on it so it doesn't get out of control.  

Without a doubt this cold is causing my MS symptoms to act up.  I am running into things, bad balance, and legs are feeling numb/tingling is worse.  I know this will pass so I'm not jumping on the phone with the neuro about it.  I see him next week anyway, so if things haven't improved then I'll tell him about it.  

Breathing is really bad with this cold though.  When I saw the MDA doctor last Wed, he ordered a breathing test.  The tech from pulmonary came in and we did 4 attempts and my best FVC was 1.90.  Normal for my age/size would be around 4.0.  The low number is likely due to this bad cold, but it is only slightly lower than the extensive breathing tests done at NIH last June.  We have got to get to the bottome of this breathing issue, but I fear that in the end there won't be much they can do to help since its probably a weak diaphram.  

The copax injections are going ok.  I am still getting big bruises, but that is normal for me I guess.  I hadn't heard from a SS nurse in almost 2 months and then out of the blue one of them called me last week.  I told her I thought I graduated and we both had a good laugh.  That proves to me that they are real people on the other end of the phone and not automated calls. LOL!  I am now 4 months into this DMD and am happy to report that I think it is helping, at least I sure hope it is helping.

I did have to resort to using my wheelchair for the first time when we went to the mall yesterday.  There was no way with this bad breating and weakness in my legs that I'd be able to enjoy even 10 minutes in a mall without being pushed around.  It was either use the wheelchair or stay home and I wanted to get out.  It is hard explaining these things to my husband and son.  I think DH needs to go with me to my neuro appt next week so the doctor can explain it AGAIN to him.  Right now it is all about conserving my energy so I can do the things I HAVE to do so I have energy to do the things I WANT to do if that makes sense.

Other than that, I wait for the results of the MDA doctor's tests he ordered last week checking for lactic acidosis, Myethenia Gravis, Sojournes syndrome (I don't have that!!!), and something else I don't understand.  He received my faxed records and wants another EMG (YUK!) and then we will talk after he has went through everything.  So, again I play the waiting game but since I've been there done that before, I can be a patient patient.

So excited about my recent pedicure

Aug 10, 2009 - 8 comments

I discovered the joy of pedicures later in life as I had more money to spend on myself than when the kids were young.  I have become so accustomed now  to walking in to my favorite nail salon, picking out my color and soaking my feet in the wonderful warm (not hot) sudsy water.  

So, what is all this excitement about with a recent pedure?  Well, for the fist time in over a year  I actually got the "tickles" when the girl scrubbed the bottom of my feet with the pumice.  No kidding!!  I was ticklish.  The girl I usually go to to do do my pedicures even noticed that I was ticklish for the first time.  

Now, what has brought back this apparent feeling in my feet I ask myself.  Could it be that I'm over 2 months into my use of copaxone?  Hmmm....It's something to think about.  In the meantime I'm thrilled.