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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A Quick Update....

I got back Monday evening from my doctors appointments. They went fairly well. I am very fortunate to have a couple of the best of the best in their respective fields. :) My first appointment was with my neurologist. I am not back on the Avonex just yet as we are rechecking the liver enzymes and it turns out I am having a bit of a flare.....nothing too serious. For the most part I feel okay. Some headaches, numbness, and pain in my legs, but the main thing going on is a new thing for me which is quite bothersome (and also why I am keeping this short)...optic neuritis. I have noticed over the last couple of weeks more headaches and sharp pains in my eyes, but figured with all this heat (and all the other symptoms) it was simply due to that...heat! But, over the last week it got worse and bright colors, even the computer is bugging me.....that is not good or normal for me. I have this sensation like there is air pockets in my eye from time to is all strange and new to me, as my eyes have been always really healthy considering (besides that I wear glasses). As a matter of fact, I just went through all the exams in May....and everything was just great. Goes to show how these things can just happen.

Anyway, so I am on IV steroids (started yesterday) with daily blood draws cause of that wonderful liver of mine and then I will continue with oral steroids for the rest of the month until I see her again on the 5th of September. As for the Avonex, it is still probably my best choice and I would rather be on it than nothing at all. The side effects aren't great....but I don't respond well to the others and the medication is there for a purpose. I trust my doctor's opinion and know I need to give this a real chance to work. I want the best quality of life I can have! That is what it most important. Let's hope for the best with the liver....which is why I saw my GI doc. He rechecked everything and did some specialized tests too (just to be on the safe side). They are being extra careful because I am still having this pain on my right side (not as often but still as painful when it is there). I really appreciate that they are so careful with my health! It is great to have doctors that care about their patients the way mine do. I may not be on much for a while, but I assure you I am okay. Just taking it easy for now......and taking care of me! I hope all of you are well. Please take care and have a good week.


Jaime said...

Oh, and I am sorry I have not been around to leave comments with anyone recently. The backgrounds and wording on the computer really does bother my eyes. I can only be on for short periods before I get a stabbing headache, but I promise to catch up real soon! As soon as my eyes start focusing better and I get to feeling a bit better. I miss you all and hope you are all well. Please take care and I will do my best to drop in on you as I can. Love to you all.


Zee said...

Hey Jaime - so sorry to hear about your Optic Neuritis! That was my first "flare" about four years ago and at that time they didn't see any lesions on the MRI so didn't diagnose MS. They just treated with Solu-Medrol and then prednisone. I responded really well to that and the ON cleared up quickly. Hopefully it will for you too!

Prednisone, though, is NASTY stuff. I mean, we're talking just seriously icky. My immune system was compromised for the next 7-8 months after getting off the stuff. I had a cold once almost once a month for the first few months. So, my suggestion: take really good care of yourself and do whatever you can to boost your immune system!

I'll be sending good vibes your way!

Linda D. said...

Gosh dern it all...hope you get to feeling better soon! Major bummer...

Linda D. in Seattle

mdmhvonpa said...

Good doctors are hard to come across ... keep them as long as you can.

Vivian said...

I am so glad that you are going to be taking some time to take care of yourself. I will keep you in my prayers that it all subsides soon. Take care.

Jaime said...

Thanks for the concern. Fortunately I don't think I will have too many problems with the prednisone as I have been on it off and on most of my life for asthma. I do have to agree that it can be pretty nasty....but I think my immune system is used to it.

I was diagnosed with MS in 2004 and have had seem to have one relapse after another since diagnosis and my symptoms and MRI's just seem to progress a bit each time, but this is my first experience of ON. I have been lucky to always have really healthy eyes until now. I am just hoping that the steriods will kick in and do their job. :) Today was my last IV and tomorrow I start with the oral. I am sure it will all work out!

I hope you are doing well and keeping cool. It is still pretty warm here. Take care.


Jaime said...

I am sure I will get to feeling better real soon. The steriods are not fun...but they tend to get the job done. Take care.

Jaime said...

It is SO true. It makes a world of difference to have the right doctor....that is nothing to trade. Good health care is too valuable! I hope you are doing well. Take care.

Jaime said...

Thanks for the well wishes. I hope you and your family are also doing well. Take care.

personallog! said...

Missing you loads babe, sorry not been around much lately. I have been busy! Hope your sight is back up and working soon!
Love ya babes

matt said...

i hope the new meds help. i don't really know a lot about what you're talking about here but i'm glad you and your doctors can work together the way you do!

Jaime said...

I have SO missed talking to you too Dave! We will have to catch up real soon. :)

Jaime said...

Hey Matt!

I am very lucky to have some great doctors. I am glad you don't have any experience with this stuff. Let's pray you never do! :) I am sure the meds will kick in and do their job real the meantime I am just taking it easy. I hope you are well. Take care.


Kim said...

Optic neuritis... oh darn! Glad to hear that your doctors are so on top of your health though. It's so nice to hear that. I hope the steriods kick in and help the attack.

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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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