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Follow Up

It has been a month since the last time I posted and yet it seems like just the other day. Time seems to really be going quickly. I can't even really think of much that has happened since my last post. I mean, I have had some things going on this week, but besides that, not much of anything. Then again, my mind seems to be elsewhere lately. I have really been struggling with my memory and so this could be part of why I can't seem to think of what all I have been up to.

Yesterday I did have my follow-up with my neurologist. She is having me return to Seattle for some tests next week. The appointment went okay. She had me do the usual exam....walking, pressing on my legs/feet, etc. Asked me about my meds, what has been going on and then decided that I need to come in for MRI's of my back. I just had one of my brain a few months ago, but it has been a while since they have scanned my back and based on what she saw she feels it is about time. She also has decided that this upcoming dose of chemo is not going to be my last. Last time I saw her we had talked about options as I was nearing my 8th dose of smurf blood and seeing how you can't have more than 12 in your life she was hoping to save some for a later date if needed. But, as I am having some stuff go on....possibly as a reaction to the heat, it is not a good time to stop. It just may turn out that I have the full 12 before doing something different. I am actually okay with that. I am hoping they will have something better to offer me by time that 12th treatment comes around. We will see..........

I also had my appointment with my pulmonary doc today. He basically shook his head, told me in all of his years as a doc, I am probably the most complicated patient he has had. My IgE levels are the highest he has ever seen, I don't respond to the meds like I should, my asthma is very much not well controlled even though I am on so much asthma medication that my pharmacy has mentioned these amounts can be dangerous, only there are pretty much no options. He could only think of two things left to do. Put me on steroids permanently which he does not want to do because of the risks involved, loss of bone, risk of infection, etc. Or, put me on Methotrexate, which is a form of chemo and has a whole slew of possible side effects. Really neither option sounds good to me and from the look on his face, I don't think he really likes the options either. We decided the steroids would be the lesser of the two evils for the time being. He sent me in for some testing today and without medication I have 52% lung power and after medication I have about 70% lung power. Not what either of us would like to see. Even 70% is not great and seeing how that was after a nebulizer treatment....not good. Anyway, he put me on prednisone for a while and then will recheck things next month to see how that helps.

So, that is what I have been up to. I hope all of you are doing well and the heat is not causing you any problems. It is hot here, but not as bad as it usually is by this time of the year. It has been steady in the 90's and we usually have temps in the 100's already. Hot is hot though and so I am doing my best to stay in by the A/C. If I must go out though my cooling vest is there to help out. :) Take care and stay cool!


Denver Refashionista said...

Glad to see you blogging again. I hope you find some health answers soon. Excuse my ignorance, what's the chemo for?

Jaime said...

Thanks for stopping in. I have added you to my blogroll! :) The chemo I am on is for my MS. It is not the standard of care, as it is considering a last resort medication. I went through all the injections without success and because of my history of cancer I do not qualify for Tyasabri. So, please do not feel ignorant about this as most people with MS do just fine with one of the standard treatments. I hope you are well.
Take care,

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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 life with MS (among other things).

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