Sunday, January 10, 2010

An Exacerbation that Lasts Forever.

It has dawned on me that it has been over 2 months since I have posted on here. I am laying in bed wondering where the last two months have gone. Granted, there were the Holidays but oddly I feel like it was yesterday when I posted on here. It is times like this that I realize that I have let the MS control me. It gets me so frustrated when life just passes by and you feel as though you are in the moment but when you look back you realize you were in bed and doing everything to fight this disease. I call it "Fight to Survive" mode.

I swore a year ago that I was going to try to fight and ride out my MS attacks. I was not going to rely on the Solumedrol to help me. Let me clarify quickly. Solumedrol is great and a huge help in trying to suppress an MS exacerbation. For me, I have horrible side effects and those side effects seem worse to me then fighting the MS exacerbation. When an exacerbation effects my vision, then and only then is when I have an inside battle on what to do. So, in November, my vision was very blurry and I was falling and very unbalanced but it was always happening on the right side. Every time I would fall it was to the right. When my vision went blurry and I was falling, I made the decision to finally take the steroids. My Neuro knows how hard they are on me so we decided that instead of doing 1000mg I.V. daily for 5 days we did 500mg a day hoping it would help put the MS exacerbation in remission and also maybe not have the side effects.

Well, the attack seemed to have been stopped so that was good however, the side effects were just as bad. And then starting in December, I started having horrible headaches and by the end of December I was very dizzy and constantly motion sick. I have had vertigo before in the past. The room would spin horizontally and I also have had it where the room would spin vertically. This time, there was no spinning. If I would move my head even the slightest... I would get so horribly motion sick. I finally went in to the Neuro this last week. Of course he responded with the fact that he would normally insist on Steroids again but since it has only been about 2 months he recommended oral steroids. He also wants an MRI done to see what is going on. He is trying to determine if this is one long exacerbation since last November or if another exacerbation is happening again. He said that either way, both have been affecting my equilibrium. By doing the MRI it will show if the MS is getting worse or not.

I have to say that I hate going in for the MRI's because you are going to have a 50/50 chance that it is the same or progressing. Who wants to hear that the MS is progressing? I know I don't!! Mabey that is denial or mabey it is just not wanting to hear the answer that we are all expecting to hear. Either way, I am very nervous.

I know I have said in the past that I think when someone is diagnosed with a disease, you go through a "grieving" process. That process eventually goes away but everytime you start to show problems again, the "grieving" process pops back again. And this is where I am at the moment.

I want this exacerbation to end and get on with my life. Get back to enjoying everyday and not losing months of my life at a time.


Just A Reminder: Having MS means having many medications in your home. I have 3 kids. 2 teenagers and one is 10. As I was looking around in my drawers, I have gained many medications over the last 2 months let alone over the last few years. Now, I trust my kids but they all have friends that know I have MS and so I thought it was a perfect time to remind everyone to find a place to lock up all your medications. By keeping them safe you are also helping to keep many kids safe.

6 comments:

Denise said...

Unfortunately, I totally understand where you are coming from! MRIs are such a stressor and bring on such fear of what will be found. I am sorry you have to go thru this (that any of us with MS have to go thru this). My last MRI showed some old ones had healed and new ones had popped up...like you said 50/50! Keep on taking it day by day and know that you (even though : D you don't know me ) are in my thoughts and prayers.

Stuff could always be worse said...

Yes so glad to see you posting again and the meds, are great but those side effects are not! hope your mri is ok...
kim

awb said...

Hoping your MRI goes well, I have mine next week.

Dabble and the Mad Sow said...

Good luck! It seems no matter how the MRI is, we still have to adjust to it. Mine showed no progression - but my symptoms are progressing - so I guess that means I have inflammation but no permanent damage yet...still, even hearing that I wasn't progressing (when I thought I was) unlocked a genie in the bottle - I find myself quite irrationally planning as if I have no MS. When it is apparent I do. So then I grieve again, and again, and again. Every time I lose something...
Got to love this disease, eh?
Wishing you well -
DA

Anonymous said...

Let us know how the MRI comes out. My husband is on the IV steriods once a month. I don't remember what the dosage is.

Anonymous said...

I understand completely where u r coming from. I had an exacerbation back in November (your symptoms and mine sound identical), but I refused to go on steroids until I was falling in January. I let it go that long. By February, I was so bad that my blood pressure was too low and the dizziness was horrific. I was home on IV steroids for a week, and ended up in intensive care for ten days for the symptoms, which were like a migraine headache and vertigo times one million. I began to get better, but the biggest frustration remains that you look fine, but feel awful. I have had to retire from ER nursing, due to the stresses, and am now home on disability. I began another exacerbation Thursday with the lovely MS hug, and am using Antivert again...I have an arsenal of meds in my home as well, and am happy that my teenaged daughter is on my team. Treatment with Tysabri resumes on Monday, and all I can say is, it has been a long three months without it. I am hoping it helps, because I do NOT want to go back on the one gram of Solumedrol for five days again. I do not care what anyone says; I certainly do not feel like I have lots of energy - I think I get worse after steroids, and then I get better. Good luck to you; had my third LP last month, and just had my MRI in June. I hope u all are doing well.

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