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.
Health Sucks!
Does it ever end? Seems like there is always something. If it is not the MS, it is something else. The last time I posted I mentioned that I was going to have to return to Seattle for some testing. Well, that is coming up soon. I am very hopeful that they will have some answers for me as I have not been doing the best. I suppose it could always be worse.
So, here is the run down......I just got back from Seattle not too long ago. This week brought a trip to the hospital which led to me loosing a day and a half. I'm not sure if they just gave me too much medication or if this was a result of my MS. Anyway, Sunday I started to have a bit of an ache in my chest and arm, which resulted in a trip to the doctor on Monday. Turns out I have some edema in my legs and needed to start on Lasix. My doc has referred me to a Cardiologist to be on the safe side but I won't get in to see him until November 6th. Anyway, I went back to him for follow-up on Wednesday and everything seemed to be steady. I am tachycardic (high heart rate) but the lasix is working. I lost 5lbs water in just over a day. Crazy!
Wednesday evening however brought a new problem.....or so I thought. Severe, sudden pain in my left upper abdominal area. I called my doc to let him know what was going on and he sent me to the hospital for further evaluation. That was about 8pm. I remember going to the hospital and them accessing my port. I know they took meds and took me in for some x-rays. After that I don't remember anything until I woke up Friday morning. Justin said my spleen is a bit enlarged and my BP was 202/95 with my heart rate in the 130's. They were able to get my BP stable and my heart rate lower (staying in the 110 range) but other than that nothing that was worrisome.
It is Sunday and I seem to be fine. Not sure what was going on! Tomorrow morning we will be leaving for Salt Lake. It is a very busy week. We will be in Salt Lake tomorrow night and Tuesday morning and then in Twin Falls and Boise Tuesday and Wednesday. On the plus side the weather is supposed to be nice! :) Plus, it has been too long since my last visit, so this will be nice, even though it is a quick visit. So, that is it in a nutshell. Hopefully this finds all of you doing well. :)
Oh, by the way....Dave & Jen got married this weekend. Congrats to them! Also, I'm not sure if you have seen this yet, but there is a new drug that looks promising for MS, Alemtuzumab (currently used for cancer) :) It is so promising in fact that the Head of Neuroscience at University of Cambridge claims it is the most promising of any experimental medication and that research shows it to be more effective than the interferon's. Great news indeed!
Sunday, October 26, 2008 | | 2 Comments
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!
Wednesday, October 15, 2008 | | 3 Comments
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About Me
- Jaime
- 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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