Last Halloween was by far the scariest of my life!!! First full day in the hospital, first MRI with frightening results, 30 vial vampire blood draw...couldn't have planned a better scare!! I can't believe it's been a year!!
Wednesday, October 31, 2012
Saturday, October 20, 2012
Home from the Hospital
Things kept getting worse, and I landed in the hospital for a few days, feeling horribly sick, and my head pressure/fuzziness completely out of control. We found some meds that helped, and I'm resting at home now. My doc says he doesn't think Tysabri is an option after this, which leaves us nearly out of options. I have a meeting with him on Monday to try and decide on a new plan. Honestly, I am so frustrated with all of this, that I'm ready to just do nothing for awhile and see what happens.
My neurologist wants to send me to mayo clinic or somewhere else for a second opinion. I'm really grateful my doc is honest about the fact that we've sort of hit a dead end here, but it leaves me back at square one, searching for a neurologist who knows how to handle my case. It's a familiar-feeling nightmare! They have already sent the referral over to Mayo, but honestly, I had a really bad experience there last December, so I'm pretty nervous about it. In fact, the worst experience I had in trying to find a doctor was at Mayo. I'd really like to find somewhere else, but most docs won't have the slightest clue what to do with my case. I've been trying to do some research into other options, but so far I'm not having any luck.
In the past couple months I have met a handful of friends online who also have Tumefactive MS. Some of them are actually on chemotherapy, which we have discussed as a last resort treatment for me. I just don't know if I want to hit this so aggressively when we are not confident of the diagnosis....And the only way to be confident is to wait for some insane, telling symptom, or to do a biopsy, which could paralyze something. What would anyone do in this situation? It's an impossible spot to be in.
Looking forward to the strategy meeting on Monday, although ultimately, next steps are going to be my choice, and I have no idea what is best.... Praying for answers. Hopefully clear ones!
My neurologist wants to send me to mayo clinic or somewhere else for a second opinion. I'm really grateful my doc is honest about the fact that we've sort of hit a dead end here, but it leaves me back at square one, searching for a neurologist who knows how to handle my case. It's a familiar-feeling nightmare! They have already sent the referral over to Mayo, but honestly, I had a really bad experience there last December, so I'm pretty nervous about it. In fact, the worst experience I had in trying to find a doctor was at Mayo. I'd really like to find somewhere else, but most docs won't have the slightest clue what to do with my case. I've been trying to do some research into other options, but so far I'm not having any luck.
In the past couple months I have met a handful of friends online who also have Tumefactive MS. Some of them are actually on chemotherapy, which we have discussed as a last resort treatment for me. I just don't know if I want to hit this so aggressively when we are not confident of the diagnosis....And the only way to be confident is to wait for some insane, telling symptom, or to do a biopsy, which could paralyze something. What would anyone do in this situation? It's an impossible spot to be in.
Looking forward to the strategy meeting on Monday, although ultimately, next steps are going to be my choice, and I have no idea what is best.... Praying for answers. Hopefully clear ones!
Friday, October 12, 2012
Still Sick
I have been so sick all week, I haven't felt this miserable in months! It's like I have some horrific drug or virus inside of me. My head is swimming, fuzzy, and my head pressure is worse than usual. I am so weak and off balance I can barely walk around without assistance. Sometimes I can barely talk because I feel so awful. My bones hurt, my joints hurt, my head hurts, i'm nauseous...can you tell I just need to complain for a minute!?! I'm actually not sure if what I am feeling now is still the Tysabri. I'm thinking the Tysabri reaction may have triggered some sort of setback. I really hope not, but it's hard to tell. (To be fair, I should mention that I was feeling funny all day before the infusion, so maybe this would have happened anyways.)
It's crazy, every time things get unbearable, I have to coach myself back into a place of patience and willingness to face this. It is honestly harder than i could ever explain to not just fall into a depression, run away (i'm not sure how I'd accomplish this, but it's tempting to try!), or lash out somehow. It always surprises me when it comes back this fiercely. Somehow I think once I conquer a day of feeling like a 9/10 on my miserable scale, that I've mastered it and it will be easier the next time around....but it's actually not. I think I have some degree of tolerance and skills for dealing with anything up to a six. I live in that space alot. But man, that 9/10 just kicks my butt every time. I so hate this. Here's to hoping this is a temporary setback.
It's crazy, every time things get unbearable, I have to coach myself back into a place of patience and willingness to face this. It is honestly harder than i could ever explain to not just fall into a depression, run away (i'm not sure how I'd accomplish this, but it's tempting to try!), or lash out somehow. It always surprises me when it comes back this fiercely. Somehow I think once I conquer a day of feeling like a 9/10 on my miserable scale, that I've mastered it and it will be easier the next time around....but it's actually not. I think I have some degree of tolerance and skills for dealing with anything up to a six. I live in that space alot. But man, that 9/10 just kicks my butt every time. I so hate this. Here's to hoping this is a temporary setback.
Tuesday, October 9, 2012
Monday, October 8, 2012
Reaction to Tysabri
I had a reaction to my Tysabri infusion today. Nooooooo!!! I'm so frustrated, I need this medication! Not sure what happened, I just suddenly couldn't breathe or think or talk or see straight. All the muscles in my hands and arms were clenching up. It was pretty awful. Fortunately, I was getting my infusion at Mercy Gilbert, so they took me straight to the ER. I was there for almost five hours, they gave me Benadryl and Baclofen, did a CT to check for a brain bleed, and after awhile things started to calm down. Barrows was at the ready to have me transferred and admitted, but I really did start improving after several hours, and I HATE sleeping over at the hospital. I couldn't be more relieved to be back home now.
Still feeling like I got hit by a truck, but the most frustrating thing is not knowing if I'll be able to continue with this medication. I really need it, and I'm afraid of next steps without it. I'm really hoping my doc will let me try this at least once more. Blah.
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