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Seattle, NMSS Annual Meeting, & More

I have been in Seattle for the last couple of nights. We actually went over on Monday where Lenita and I met with her niece and her baby for dinner. I had a couple doctor's appointments yesterday and it was better for both of us to go over the night before than try and get up and moving at 4am Tuesday morning. I am especially grateful that we went over Monday because Tuesday ended up being quite the day and today I am really feeling it.

So, yesterday I had my appointment with my neurologist. After reviewing my MRI and discussing all of my recent issues, both MS and the spasms, breathing problems, she decided it would be best to do some more tests before putting me on a different treatment. Yes, I have MS (I was not misdiagnosed or anything, I even have very clear Dawson's Fingers) but I may have something else going on. So, how many things can one person have go wrong? Anyway, she feels there may be something more going on and before starting me on Cytoxan (which is most-likely to be my next treatment) she wants to get more information. And, I appreciate that because I really don't need to have anything else happen. :) Fortunately I have been blessed with one of the best neurologist in the area (at least I think so)! So after my appointment I headed over for labs, Anti-ACh Rec, Anti-MUSk, and Vitamin D. Then I have been referred for a sleep study, EMG, and more specialized neuro-muscular testing.

The afternoon came with an appointment with my new pulmonary doc. That appointment was actually short and sweet. After reviewing my records and with my health history, he too decided he needed more information. He also sent me for labs, basic things like CBC, CMP, ANA, and IgE. He is having me come back for some Pulmonary Function studies as well as CT's. All of which (including the neuro tests) they would prefer to have done in Seattle (which means I will be returning first week of November for several days). As if I don't spend enough time there anyway. lol My neuro actually suggested that maybe it's time to consider moving. We'll see! There are just too many other things going on to go there right now (like all the stuff with my grandma). For now I will just continue with what used to be bi-monthly trips and seem to have turned into trips every 3 weeks or so.

Finally, after all of my doctor visit running around (which seemed to take most of the day) we picked up a friend, who also has MS and recently moved to Seattle, so that we could all attend the Annual NMSS - Greater WA Chapter Meeting & Dinner. It was great to hear of how the chapter is doing, hear of the new board members, and meet some new people, some of which do not have MS but are actively involved in the chapter and serve on the Board. One guy we talked to for quite awhile (actually Lenita did most of the talking) owns Columbia Athletic Clubs! Lenita teaches the MS water class locally and so we were telling him and his family about how helpful the water classes can be for people with MS. Not only has it helped me personally, but I know others who have done very well! The Chapter is doing very well, and although I won't go into too much detail, our chapter, I am proud to say, creates a lot of the pilot programs which develop into NMSS Programs on a national level. Very cool!

So, I hope that this finds each of you doing well (and hopefully not running around like a chicken with your head cut off, which is just how I have felt the last few days). Please take care and let me know how you are doing!


Denver Refashionista said...

Not running, just working like a dog. I hope you get some good answers soon.

Jaime said...

Me too! Thanks. :)

Diane J Standiford said...

Wow, that sounds super. I have had such bad luck with getting help from the MS Chapter here. They fail me again and again, my good friend too. Those dinnrs are too $$ for us and like you say, mostly rich people who don't have MS. I admire that you go. When/if you move to Seattle we will have coffee or chat.

Anonymous said...

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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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