This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Waiting.....

Everything the last few days has been about waiting....seems to be the theme song in my head right now. lol

I have not heard back on the status of my medical records for the HALT MS Study yet, however I have left a message just asking what the status is. Of course I am doing my best to be hopeful that I will have passed this first stage of having my medical records reviewed so that we can move forward....I am quite hopeful that being a part of this study will ultimately not only lead to helping many people with MS but also to me getting much of my life back. That would sure be nice! For now I am just waiting to hear back....

I am in the midst of yet another MS relapse. Yesterday morning around 4:30 I had a spasm in my vocal cords which cut off the airway making it so that I could not breathe. Fortunately I know what to do in these situations as this is not the first time this has happened. I removed my CPAP (which is supposed to help reduce these episodes....that is questionable if you ask me) and thew on my Nebulizer (which I always have ready in case I need it). 5 treatments later, 4 hours later and sitting in my PCP's office where I am examined and we have conversations with my Pulmonary doc and Neuro....it is determined (based on other symptoms as well) that I am once again in this vicious cycle of my MS fighing with my lungs. My swallowing is reduced and weakend, I have spasms....most dangerous however is the ones that affect my breathing and my lungs are reacting to where I am qutie tight. To top it all off I once again have bronchitis.....which probably was the instigator of all of this anyway. I was coughing up blood (still have a little) but was told this is really do to how hard my lungs were fighting all of this as my vocal cord spasm was such that I have been aspirating which in turn forces my lungs to try and move everything up and out of the lungs and that strain was enough to have some blood....as well as cause me to throw up a couple times.

Have I ever mentioned just how sick of MS I am???? Or, how much I hate MS sometimes???? Yeah, I know....we all feel this way from time to time. So, now I am back on steroids for 5 days (started my first dose yesterday afternoon). I am sitting here just waiting and wishing that I will feel better, my MS will settle down, my lungs will work the way they should, and that I will get an update on the study......just sitting, wishing, waiting!

I hope this finds you all doing well, enjoying your week and looking forward to a wonderful weekend. Take care!

2 comments:

3carnations said...

Wow - I had not heard of MS affecting your vocal cords. It's just another reminder of how lucky I am that numbness is the only thing I deal with. My thoughts are with you - I hope things improve!

Pamela said...

OMG - I hope you're ok!!
And I HATE MS TOO!!! Just hate it!
I'm so sorry that you have had this issue. Very scary. I hope it passes very soon and you feel so much better.
Please take care!
Pamela


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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