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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Where Do I Begin?

Why is it that just when you think you are starting to feel better and things are starting to look up.....nope, it just can't be that simple! Friday I was doing so well, took Nate to a Dustdevils game, his friend, Kolton came along and then stayed over. They were up late watching movies and having a good time. I did my Avonex and had very little side effects. I had a little bit of pain and a small headache, but that was okay.....not anything like what I had the previous weeks.

Saturday I woke up and had this horrible pain in my side (upper right abdomen). I took my regular meds, which also consist of Topamax and Baclofen (for nerve pain and muscle spasms/spasticity) and figured it would go away. No such luck. So, I called my doctor. He said you need to go to the urgent care. I went to the urgent care. I had a mild temp and my BP was high (which is very unusual for me)...140/90. They did a UA.....normal. They then did a CBC and LFP. The CBC was normal (for me....always just a bit anemic) and the LFP showed my liver enzymes were a bit elevated (didn't get the results until Monday though). I was told that it could be one of several things....my liver, my pancreas, my rib cage, a bile duct that is blocked, or any other number of things. At least they were pretty certain it was not too serious since I don't have my appendix. There was not a lot they could do for me so they sent me home and told me if the pain got worse to go to the ER.

I tried to make it through the night, but the pain was just too much. Around midnight I finally gave up and went in to the hospital. That was a fun experience. Even though I brought the lab results (UA & CBC) from earlier at the Urgent Care I got to repeat them. They also did a CMP. This showed that my sodium, albumin, and A/G were all low and my liver function was slightly elevated. The UA and CBC showed the same as the previous ones. The doctor there told me that it was not showing a whole lot and so I needed to take some Loratab and come back in 12 hours to recheck. This seemed strange to me and honestly, kind of pissed me off. I am not feeling well, already in the hospital and they are just sending me home. So, they go to release me and take my vitals....my BP at this time was 159/93. The doctor says this is because of the pain. It will come down when you take some pain pills. So she gives me some Loratab (which I am not supposed to have tylenol based meds....but that is all they had on hand) and some anti-nausea meds to last until I could come back in to be re-tested.

Sunday rolls around and I go in to be re-tested. Fortunately this time I have a doctor who seems to give a crap about his patients. My fever has finally broke and my BP is okay....pain pills must be working some, even though I still feel like crap. So, they come in and have me do another UA....normal. Draw more blood....another CBC, another CMP. This time my electrolytes are okay but my liver function is just a little more elevated. So, off to CT. This did not show a whole lot, but my liver is enlarged. Great! This is what happened when I was on chemo.....so is this from Avonex? Well, we are not sure. All I know is I am in a whole lot of pain and we are still not really sure why. Due to the amount of pain I have been in along with how much nausea and dizziness I have had, the doctor gave me some pain meds through IV along with some IV fluids before I was discharged. I was also given not one but two doses of anti-nausea meds through IV (only this did not help AT ALL) . I was then sent home with a RX for hydrocodone and anti-nausea meds. My wonderful mother came and did all the running around for me as I was unable to at this point and let me just say...these meds did NOTHING for me. Even with the anti-nausea meds I was unable to keep anything down, not even water.

Monday afternoon when I finally got to the point where I was no longer throwing up (TMI...sorry) I decided I was not going to take any more of the pain pills. They were not helping THAT much and it seemed that if I were going to be in pain anyway, I would prefer to be in pain and not throw up. I called Dr. Jung (my neurologist) and left a message with her of what is going on......her office called back yesterday and they are giving me a break from the Avonex for two weeks until my next appointment on August 7th, at which time I will be rechecked to see if the Avonex has anything to do with the slight increase in my liver enzymes. I also called Dr. Shaw (my GI) and left a message with his office. They have since called me several times. I have an appointment scheduled to see him on August 7th also, but they want me to come to Seattle to have a test done beforehand....a MRCP. His nurse will call me back with the date and time as this is a more specialized test and they need to have a radiologist available who can read it.

I then called and scheduled an appointment with my PCP, Dr. Breeden who I saw yesterday. He is wonderful. He looked over everything and examined me. My BP was way high again....148/103 (most likely due to the pain). He said that this may or may not be my liver but that the best thing would be to control the pain for now and get in to see Dr. Shaw as soon as possible. He is the specialist and hopefully will be able to figure this out. Good thing I had already contacted Dr. Shaw's office! Dr. Breeden was nice enough to get me some different pain medication and anti-nausea meds. It is possible that I am getting sick from the others because of the tylenol in the medication and since my liver is hypersensitive right now.....this could just be a problem. He gave me a RX for OxyIR and Tigan which has NO tylenol at all and the Tigan is a heavier anti-nausea. I got it filled last night and so far so good! I am still in a bit of pain, but this medicine seems to help more. I am not sure if it is because it makes me so drowsy, or what, but at least I am not getting sick from it.....that I am very happy about.

Today I am basically staying in bed, on meds, and trying to get some rest and be as pain free as possible. I hope all of you are having a good day.....week. Please take care of yourselves, and stay cool. It is still really HOT here! I think today it is supposed to be 100` (which is better than it has been....but still hot).

I hope all of you are doing good.

6 comments:

Zee said...

OMG, Jaime - so sorry to hear about your rotten weekend. I was just diagnosed with MS and just started two weeks ago on Avonex. So far so good, but I'm keeping my eyes on it.

I've been reading your blog for a couple weeks (found you through someone else, though I can't remember who at this point!) and have enjoyed it. I'll be sending good thoughts your way and hoping they figure out what's wrong. How scary!!

mdmhvonpa said...

Around midnight I finally gave up and went in to the hospital. That was a fun experience.

You need to stay away from that place! Good thing Mom was about to lend a hand.

personallog! said...

awww babe!I wish I could do something for you to it a bit better for you....As per usual your going through the wars and if you need to have a laugh just get in touch.

Love you babe
Dave

Jaime said...

Thanks for the well wishes Zee! I am sure you will do just fine on Avonex once you get used to it. Of course there is always a risk of liver problems with any of the interferons, but that risk is pretty low. My risk is a bit higher because I had a reaction to a previous medication I was on that did damage to my liver. Fortunately, my GI doc does not think my Avonex is the culprit. He had done some more tests and soon enough, I will know for sure! :)

I have been pretty blessed with some great doctors and I am sure they will figure out what is going on. Sometimes these things just time time. In the meantime...I have drugs to rely on (not my preference...but what are the options?)

I am glad that you have stopped by! There is such a wonderful network of MS'ers out here to support each other. If there is ever anything that I can do, please let me know. I hope that you are doing well and staying cool. Please take care.

Jaime

Jaime said...

Mdmhvonpa,

If only I could stay away! That would be a wonderful feeling...I am SO sick of going to the hospital, doctors offices, lab, etc. Don't get me wrong....I like my doctors, have great respect for them and thank God they are as good at their job as they are, but it would be nice if I could just have a few months where I just felt good and could stay away! I hope you are doing better. Take care of yourself.

Jaime

Jaime said...

Dave,
You always make me smile! :) Thanks for always being here. You are a wonderful friend and great support.x
Jaime


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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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