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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Looking up Indeed!

We got back from Seattle very late last night....about 11 pm. The roads on the way back sucked....pooring down ice rain! Other than that, things went quite well. My appointment with the Head & Neck surgeon was very encouraging. Although I am not real excited about the idea of surgery, this particular surgery just may be the best thing that ever happened to me. It turns out I have a deviated septum, very small sinuses, and small nasal pathways. All of which is most likely contributing to my breathing problems but could also be contributing to my other medical problems (like my inability to get a good nights sleep). Turns out (although not surprising) that all of these things effect the others. The hope is that after having the surgery to open up my nasal passages and sinuses, not only will I be able to breathe a lot better (which should help my asthma) but I will respond better to the CPAP machine, be able to sleep better which will reduce the amount of fatigue I have which in turn will also help my heart and so on. It is like this big snowball effect. It has been a snowball effect in the wrong direction for too long and now we are going to turn all that around! (Here's to staying positive).

I am not quite sure when the surgery will be. The doc wants to keep me in the hospital overnight to be on the safe side and then would like me to stay in Seattle all week so that I am not going over the pass just after surgery. Although it will not damage anything, it could be quite painful to go over those elevations. Anyway, I should know on Monday. This means many more trips to Seattle. The surgery will be on a Monday. I will be in the hospital until Tuesday and then have my first follow-up on Friday (then I can go home). Follow-up will be weekly for a month and then monthly for a while. So, no slowing down on the traveling for a while.

My other tests and appointments went well. The gastric emptying study was not too bad. I basically had to eat a little oatmeal and then lie down for 90 minutes while a computer monitored me. I took a bit of a nap! Then I had my follow-up on the sleep study and I now have sleep apnea. Turns out I wake up like 7-8 times every three minutes, I am getting virtually no real sleep and I stop breathing on average 19 times a night. Plus my average oxygen level is 88-89%. Not good. They really don't want your oxygen below 95%. Anyway, my final appointment was with my neuro and it also went well. We talked about all the results...labs were good, EMG was good, some of my recent issues are not MS related but more likely to be due to my lung problems (which can cause stress to the rest of the body) but other things (such as the muscle spasms in my vocal cords) probably are from the MS. Botox can help with that. In regards to treatment, I will be going back on Copaxone. We had talked quite a bit about the idea of trying Cytoxan (which is a backup plan) but with my having surgery soon the last thing I want (and she agreed) is to supress my immune system with chemo. There has been studies done that show people have responded well to Copaxone after being on Novantrone (even if they did not respond well before the Novantrone) so this seems to be the best alternative at the moment.

Personally I am a bit relieved. I had mixed feelings about my options. I knew Copaxone was an option and was not real sure I wanted to go there as I did not respond to it, but I figure I will never know how I will respond unless I try. The worse thing that can happen is that it does not work and then we can do something different. In the meantime I am keeping positive that the Novantrone will have given my body the boost it needs to respond to Copaxone. Although the Novantrone worked great, it is a chemo and that is hard on the body. Plus, I am thinking that a shot a day it much better than and IV treatment at the hospital each month with steroids attached. Hate the steroids!

I am also very optimistic that this is all going to work out and not only will I feel better, but I will have more energy, finally be able to do some real exercise (without all the breathing problems) and if I'm off the steroids, loose some weight! Keeping the fingers crossed!

Next week we will be in Salt Lake for thanksgiving, so I want to wish all of you a Happy Thanksgiving now! I hope you will have a fantastic dinner, great time with the family, and a day to relax. Remember not to over do things (as it can be easy to do during the holidays) because stress is not our friend! Take it easy and enjoy yourselves! Happy Thanksgiving!

1 comments:

Denver Refashionista said...

Stay positive. Good luck and happy holidays.


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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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