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Wednesday, August 1, 2012

How one knows when they're relapsing.. my answer

Just yesterday, a friend asked me how one knows when they are going into a relapse.  She felt rather "stupid" (her words, not mine) in asking me this somewhat basic MS question but honestly, how do we know when our neurologists can't even agree on what a relapse entails?  This friend was diagnosed just this past December so I understand her confusion and anxiety when she asks me questions and believe me, I'm flattered when she comes to me with her concerns as I try my best to ease her mind.  I never claim to know everything about MS but do my best to inform her from what I have learned along the way, as gently and honestly as possible.
The answer I gave her, as to how we know if we are going into a relapse, was: "I'm not sure how one knows exactly.  I feel I have been in a relapse since the beginning of the year but my neurologist does not agree with me.  I feel when you feel your old symptoms flaring up again, it's a relapse. If you feel new symptoms you have never felt before, you should call your neurologist.  Actually, if your old symptoms are flaring up, you should call him too.  They usually want to take new MRI's to see what is happening, but even without new lesions showing (as occurred with me), shit.. I'm still having a flare up!"  What do I mean by this last part?  Well, my MS got worse around November or December (2011) but the pain progressed dramatically by February and my right leg became too weak and unreliable by mid-April to drive anymore.  YET, my neuro refuses to believe I'm having a relapse from the lack of enhanced lesions (old or new) in my MRI's.  But what about the many people who are diagnosed with MS despite the lack of lesions on their MRI's?  Or even those who have normal Lumbar Punctures?  There are other ways to prove you have MS and there must be other ways to show I am having a relapse, such as I FEEL LIKE FUCKING SHIT AND MY RIGHT LEG IS WEAK AND THE PAIN IS GETTING WORSE, NOT BETTER!!!  What more do these doctors need?!!
Luckily, I have an appointment tomorrow (Thursday) at a pain clinic.  Apparently what they usually do at these places is inject some sort of pain medication into the affected area, but I am not going to allow them to use steroids on me.  No matter how much the doctor I am assigned will insist (and from what I've heard, they sure do like to push corticosteroids!), I know they have other pain medications at their disposal and they will need to use one of those.  Just as I refuse Prednisone and Solu-Medrol for my MS (due to my being diabetic and these steroids not really helping me much anyway), I will not allow steroids into my body, considering much of the food in the USA is already full of them!  Yeah, I'm stubborn enough to stand my ground so they'd better be ready for me.
This picture is almost perfect.. it's just missing one more kitty!
The scary thing is that I'm becoming almost used to the way my life has been these last seven months or so, which includes not being able to drive in four months.  Will this be my "new normal"?  I sincerely hope not but if it is, I know I'll survive, no matter how much I wish I could go back to the way I felt just last year, when I was far more independent.  After my couple weeks of deep depression, it's good to be mostly back to being myself again and seeing life more clearly and less dismal.. yet I'm horribly fatigued.  I'm not one to take naps or feel tired throughout the day (especially since I'm not able to do much of anything anymore) yet lately, I am tired beyond belief.  I know my cats love it since they get to sleep on top of me when I lay down on the sofa, though!  Ahh, what would I do without my precious babies?
July 23, 2012, in front of my house
July 23, 2012.. I really like this one!

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