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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Good News, Bad News....

The good news is that my labs came back basically okay. Most of them were just fine. My liver function is still slightly elevated...but improving according to Dr. Shaw (hmmm...maybe this does coincide with the Avonex injections) and my iron studies show I am still anemic (no real surprise there). The bad news is that we still don't really know what is going on, what is causing all this pain.

Dr. Shaw said that although it still could be my liver causing the pain it is not likely because my liver function is improving and it is not too elevated. So, there are a number of other things that could be going on. Based on the location and type of is most likely musculo-skeletal. He wants me to call my PCP on Monday and have them get me in to see a rheumatology/Immunology specialist next week! This way they can either treat it or rule that out. He says that if that is not what is going on there is a small chance that I do have an ulcer or that I am having spasms of the bile duct and/or pancreas. These things are more rare (well, except ulcers). The ulcer is unlikely because I just had a colonoscopy, endoscopy, and SBFT within the last 6 months. An ulcer would have been detected at that time if I had one at that time. Considering I am on Prilosec twice a day and Ranatidine at night..this should be protecting me, making this an unlikely possibility. However it would not be unheard of either seeing how these can be caused from NSAIDS and since starting Avonex I have had to take Ibuprofen each week with my injections (and on the day following).

I have a follow up appointment with him on August 7th and if it turns out this is not musculo-skeletal then he will order some more tests. He informed me that the reason he did not order the MRCP is because it is a specialized test and with there being only a slight chance that I am having these muscle may not be worth the risk (until other things can be ruled out) seeing how there is a risk of developing pancreatitis. Let me tell you how happy I was to hear that! I have enough medical problems and so I don't need one more. I have been pretty blessed when it comes to my doctors. I am so grateful I have doctors that are willing to look at everything and try to really figure out what is going on, rather than just give me a medication and tell me to go home.

Somehow I have been lucky enough to have doctors who actually care about their patients and don't suffer from the "God" complex (at least not too much). LOL I have had doctors in the past who suffered from the "God" complex, but they were so good that it was not a huge thing. I think from working in medicine you learn that although in some situations it is nice to have warm and fuzzy...the important thing is that they are good and know what they are doing. After all they are only human ("God" complex set aside) and therefore they are not perfect. They are just doing the best they can!

More good news....I got my training manual in the mail today to become a NMSS Ambassador! My first training is on Monday (phone training) and I think there is a lot that can be done in our area. Hopefully we can come up with programs that will work well enough that they can impact all MS'ers! If any of you have any ideas of programs you think would be of benefit...let me know. I would love any suggestions. Of course I have my own ideas, but I would love to also hear from others!

The weather is finally starting to cool off a bit! That is always good news (well, until it gets too cold, lol). The high today is supposed to be 88` Whoo Hoo! Much better. If it continues to cool off (and stay cool) I might actually be able to do something outside for longer than a few minutes! There is an art fair going on this maybe I will go check it out. The hydroplane races are going on this weekend also (biggest in the country!), and so tomorrow Nate has been invited to go out on a boat (with some friends of our family) and watch the races from the river! I am sure he will have a blast! I am so glad he is getting the chance to go. I always hate it when there are things he wants to do and I am not feeling well. Thank goodness for friends and family who help out! :)

Hopefully all of you will get the chance to do something fun this weekend! Stay cool and take care.


Suzy said...

Sounds like you've been through alot lately, and your right, bedside manner aside, I'd rather have a 'great' doctor than one who is nice and sweet, yet doesn't know one thing from another.

Glad to hear your in training for the NMSS Ambassador..they sure could use a 'few good men/women'! =o)

I wish it was cooling down the heat index was 115 degrees! Can you believe it!

Take care!

Jaime said...

115` would kill me! lol I hope you have stayed in somewhere that is well air conditioned. Have a great weekend. 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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