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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Back From Seattle!

So, I still don't know a whole lot about what is going on with the pain in my side, but I am back from Seattle. I am glad we did not have to stay the night. My GI doc poked my abdomen all over and decided to do further labs. He is doing a CBC, liver function (and more specialized liver enzyme testing), pancreas enzyme tests, and iron studies. Once we have the results (which he will call me with this afternoon) then he will let me know if he needs more testing done. Unless there is something critical, I can do the testing here in the Tri-Cities! :) I was so glad to hear that because I have to go back to Seattle on August 7th as it is. I love Seattle and all...but I really did not want to go 3 times in just under 2 weeks. It is too early to really know what is causing the pain but, he has some ideas as to what could be going on. The thing is, until the test results get back there is no way to really know. For now we will just have to wait and see (and continue to take pain killers). So, my Friday plans....stay in, stay cool, try to maintain pain, and take it easy! I hope all of you can do the same (minus the pain that is...hopefully you have no pain!)

I have a question for everyone....have you noticed changes in your dreams? I have had on a few occasions since starting Avonex some nightmares (another one last night) and other nights I don't seem to dream at all, which is unusual for me. Just curious if other people have noticed changes in sleeping patterns/dreams with the interferons. Some of my nightmares have been pretty messed up and unlike any dreams I have had before starting the meds (sometimes they have even been violent). I posted the first time this happened....maybe it is just a coincidence, not real sure but I would love to get some feedback about this!

Also....I have just gone to catch up on everyone's blogs and Kim (I am sure you all know who she is! and BTW...she has posted Show 28 so go have a listen) has posted a letter that Natalie put up on her blog. It goes a little something like this....

"Having MS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me..."

and with that I give you only a teaser as I ask that you please visit Natalie's site for the full letter! Also, I just want to point out that this is not to make AIDS or Cancer seem less serious than it is just that MS can be an "invisible" illness and many people really do not understand it. Take it from someone who has MS and has had cancer. It all sucks!


mdmhvonpa said...

Unless I get a full night's sleep, I don't remember or don't seem to have much in the line of dreams. Getting enough sleep these days is a rare occurance. Do you think it could be Needle Anxiety?

Jaime said...

No needle I have been on some form of injection for as long as I can remember (allergy shots, chemo, vitamin b-12, and now MS). I am not sure what it is all about...thankfully they are only once in a while and maybe now that I am getting a break from Avonex I will be able to get some better sleep (as I too seem to have problems getting to sleep to begin with...or if I do getting restful sleep).

Have a great weekend and hopefully you can get some sleep (or maybe 15 good minutes to rest!) :)


Zee said...

When I first started on anti-depressants (lo these 11 years ago now...eek!) I noticed a dramatic change in my dreams. One of the first ones was a dream where I ran over a dog with my car!! I woke up in a panic, freaking out. The dreams were sometimes violent, sometimes disturbing, sometimes just crazy, sometimes all of those things. And they were always unbelievably vivid! And I had them with quite a bit of regularity for several months. Eventually, though, the wacky dreams went away, though every time I've changed meds or even dosages the strange dreams return for a little while.

So, all that is to say, I have no idea about the Avonex but I do know that other medications can cause changes in dreams so it's definitely possible that the Avonex is messing with your mind. I've only taken two Avonex injections and I haven't noticed any change in my dreams yet, but if I do I'll let you know! I definitely know how freaky some of those dreams can be. Yikes!!

Jaime said...

That is very interesting as I have kind of assumed maybe it would be from Avonex based on some of the other side effects that are possible (and on some things I have heard about interferons in general). As you mention this though it occured to me that when I started Avonex, I also started a couple other meds (one of which was an anti-depressant to go with the Avonex) and had a few others I was already on get increased doses. I suppose any one of these medications could be the culprit or maybe it is the combo. Please keep me updated though. I hate having these dreams and so many problems with my sleep. Maybe at my next appointment my neuro can figure something out to help with this?

I hope things are going well for you and the packing is "moving" along nicely. HA! :) Take care of yourself and try to stay cool.


matt said...

i'm back!

lots of medicines give you crazy dreams. (like melatonin. hehe.) it prolly is the avonex.

Jaime said...

Glad to see you are back Matt! I hope you had a good trip to DC. I am not sure what is causing all of the sleeping problems/strange dreams, but I think I will ask my neuro at my next appointment if she has any suggestions of something that will help!

Take care of yourself.


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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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