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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Headed to Seattle.......

I will be heading to Seattle tomorrow to see my various doctors. I have my first appointment at 8:15 with my Endocrinologist, then at 9:15 with my GI doc, and finally at 1:40 with my Neurologist. Somewhere around noon I will also be meeting with the Serrano drug rep to pick up the give aways for the MS walk this year. Needless to say this is going to be a very long day! Fortunately my dad will be driving, so I should be able to sleep some in the car.

Things are definitely better than last week. My blood sugars are back to normal and I am not having as many problems with my asthma and allergies. I was in on Friday for follow-up blood work and my liver functions as well as my Lipase is still elevated. I suppose it is just going to take a while till it all evens out. At least I am feeling better. That is a start.

The only thing is that I am so tired. Always with the fatigue. I wish there was something that would help with that. So far I have not found anything that works for me. Anyone have suggestions? It seems that I have gotten to the point that if I do anything (and I mean even little things) I am not able to function at all the next day. I am not sure what the solution is but it is quite frustrating. I am finally feeling better and when I get up I feel mentally as if I should be able to get up and get things done, problem is my body doesn't want to keep up. Such is MS!

I am hoping my Neuro will have some ideas. My Oncologist has been talking about switching my chemo. I am on my 7th Novantrone and since I have not been doing as well (still better than before so I am happy about that!) he thinks it may be time to stop it and try something else. He has mentioned Cytoxan and Rituxan as options. I know a couple of people who were on Cytoxan, one of which was on for like 4 or 5 years and did great! It gave her her life back and she stayed on it as long as she could. I don't know much about the Rituxan except that it is sometimes used to treat Lymphoma, which could potentially be a plus for me since that is what I had. I am sure that my doc will have more information and we can make a decision on what will be the best treatment.

1 comments:

Diane J Standiford said...

What a day! Well, I have yet to meet the person who stays on Novantrone. I'll keep my opinion to my Irish self, but it ain't good. This is hard to hear, but the only thing I ever found to fight MS fatigue was weight lifting. I started with a pencil and built up from there.


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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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