I haven't done a health update in a very long time, so it's about time.

I am feeling so good lately that I just can't believe it.  It is like I am almost my old self again.  Work is good. home life is good, health is great at least MS-wise, what more can I ask for.  Still haveing breathing problems, but I can handle that for now.  

About a month ago I was talking with the MS nurse who told me about a clinical trial using Cymbalta for nerve pain caused by MS.  I was so excited to try it and was ready to sign the concent until she told me that I had to have an MS dx for one year to be eligible.  I felt myself shrink down to nothing when I heard that.   Why one year?  But the good news is that it is a drug that anyone can be prescribed, so she encouraged me to try it.  Come to find out, my neuro had prescribed it 5 months ago after he decided to take me off neurontin because my dosages were getting way to high and side effects were becoming a problem.  I did fill that script, but just couldn't bring myself to start on a drug that I saw as mostly an anti-depressant and made you gain weight.  I told the MS nurse that I have had a bottle sitting on my shelf for the past 5 months not sure if I really wanted to try it. She encouraged me to try it for one month and see what happens.  If it doesn't help, then stop taking it and move on to something else.

Well, I decided to take it and I am so happy I did. Within 2 days I had a significant decrease in the pain in my legs.  Every time I would lie down and worst of all every morning I woke up with severe pain in my legs.  That is now pretty much gone.  I still have tingling and numbness, but the pain is under control thank G-d.  Now that I am not in as much pain, I am not falling or having near falls nearly as much.  I am still wobbly and off balance, but I don't fear falling anymore.  I can feel the ground a bit better with my feet too.  

I know good things don't last forever, but for now I am grateful for some normalcy coming back in my life.  And most of all I am happy the pain is under control.  Life is good!

P.S - I have actually lost weight on this med and that is a definitely helping in so many ways.

I have been trying to get to the bottom of my breathing problems and still have not made much head way.  I want to give up and just accept things are always going to be this way, but then out of nowhere the urge to keep digging for answers comes back.

I developed mild asthma about 6 years ago.  I never had an asthma attack for wheezing or any of the usual asthma connected symptoms, but they still diagnosed me with asthma becaue I had a positive reaction to methocholene, a drug they use for testing for asthma.  The lung doctor put me on one asthma drug after another and the result with all of them is that they helped but only with marginal improvement.  The only thing that has really helped was steroids and they only helped while I was on them.  So 3 years ago my lung doc and I had a conversation about continuing asthma meds.  I stopped them and nothing dramatic happened.  I noticed my breathing was getting a little worse over time, but nothing dramatic.

So, last June I had a full pulmonary function test and that showed a dramatic and significant decrease in lung function.  Another test a month ago showed a further decrease.  A lung doctor I saw, someone new to me, sent me to a neuro to see if it was a a neuromuscular probelm.  He concluded that the breathing problems were MS related even though my MS neuro said that it wasn't MS and to dig deeper.  I have now been sent back to my lung doctor for her to figure out and well, we can't see to talk to each other because of playing the ol phone tag game.  

I am most discouraged right now that I can't even get a simple flu shot noneless the H1N1 vaccination.  I am discouraged about not knowing what is at the root of this problem.  But I am not feeling defeated.  I will keep plugging away to find the answer and more importantly some type of treatment that will help get things back under control.

I saw the neruomuscular doctor after the EMG/NCS last Thursday and am very disappointed with the evaluation.  They were behind schedule and I wasx the last patinet, not getting out of there until after 6 pm and hope that fact didn't have anything  to do with his hurried evaluation.

I was referred to this doctor by my pulmonologist who was concerned that there was a neuromuscular component to my breathing problems and significantly decreased lung functions over the past few years.  We also talked about how my legs would get this extreme burning pain and weakness when I climb stair, hills, or otherwise exert myself more than just the normal walking, which I still have pain but to a much lesser degree.  

So, he did a couple of tests looking for myethenia gravis and sojournes syndrome and guess what?  They were negative.  So, since they were negative and my emg was ok, borderline, but on the nomal side, then he was done.   He said he thought these symptoms caused by MS. That was the only conclusion he could come up with.  My MS neuro looked at my lung function results just 2 days earlier and was certain this wasn't caused by MS. I didn't bother to mention that to this doctor.  I did tell him tell him that I asked other MS patients if they have the sudden burning pain in their legs and no one else was having that symptoms so how could he say this was MS related.  His response was to suggest I take neurontin.  I told him I was on neurontin.  He forgot that we'd had that conversation already a week earlier.

I think this guy could have done more to try to help me, but for whatever reason he chose not to.  I hate to think that once he heard about the MS diagnosis that he stopped there and hung his hat on that.  I have no answers and throwing more drugs at the problem while not fully knowing the underlying cause to me seems unacceptable.  It is too bad this guy took the lazy way out and I feel I am the one who will pay for it in the end.

It is always hard to walk away without answers.  I know these symptoms are not due to MS and my MS neuro agrees.   I'll go back to the lung doctor and see what she wants to do to figure this out since her neuromuscular referral didn't pan out.  As far as the leg symtpoms, I guess I just have to learn to live with it like everything else.  

However, despite this experience, I am hopeful that eventually figure this out somehow some way because I am not a person to give up easliy.

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.