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It’s been a while

October 31, 2011

I don’t think I’ve ever gone this long without updating…It was a rough weekend to say the least.
Gotta be quick because I need more time than usual to get ready:
1) I’ve been using my cane at school. At first there was a lot of “what did you do?” “are you ok?” kind of things. Especially since I didn’t just show up at school using it. I managed to get to my classroom, then had to get up to hand something in and ….ya no way I was doing more walking on my own. Someone had commented that I was moving really slowly on the way to class, just said it was cause I was in pain. Was pretty vague in answering questions but didn’t give any sarcastic responses (so no falling off Mt. Everest). Just said things like “muscle spasms” “autoimmune disease, I caught a cold so I’m having a rough bit”. I gotta admit….I’m surprised at the responses. Some people never asked about it directly (just seemed a bit uncomfortable so I just made as many jokes as I could), one just asked “having a rough day huh?” and that was all they needed to hear. Got a few “get well soon”. Everyone’s been really nice about it. Ran into my old teacher and she was just like “woah woah woah wait a second, what happened here?!” I don’t know why I told her, but I’m just really comfortable with that teacher I guess, so I told her it’s possible MS. She seemed heartbroken.

2) My legs are still frigged. There is a lot of numbness now so it’s not really all that painful anymore (besides the wicked foot spasms geeeeeez). Legs are still shaking like jello though and I’ve had plenty of near falls. I can get around short distances (like around the house or in a store if I can lean on a cart) without the cane as long as I have something to grab on to just incase I start to fall (balance is kinda shot because of all the …i dunno what to call them, microspasms? going on in my legs.

3) My stomach is completely screwed up. Suffice to say lots of trips to the bathroom and I’m not happy about it. Making me a bit anxious about going out in public.

4) STILL have that bloody cold. Not as bad now, but still lots of coughing and runny nose. Taking forever to go away and it’s kinda just pissing me off now.

5) Hit an extremely dark spot this weekend. I got my MRI disc on Friday….don’t really want to talk much about that cause I can’t really think about it without crying yet. We’ll just say the report was WRONG and it needs to be redone with contrast dye (I’m confident it will light up like a christmas tree with dye). Hoping I see Dr. Kickass before my spine gets done so I can show her the disc and talk about altering my requisition.

That’s about it…will write more indepth about looking at the disc when I’m a bit more up to it. I’m still really drained from seeing those pictures. Trying to put it in the back of my mind and just go on with life, but it’s just one of those things. Wish you could unsee it but you can’t.


From → Journal

  1. softballmel permalink

    I’ve been reading your blog for a while but haven’t commented yet. I just want to reach through the screen and give you a huge hug. I’m a 23 yr old from Australia who started showing symptoms 11 weeks ago and going through the testing nightmare. My original brain & c spine MRI showed nothing which has stumped my doctors so i’m in limbo, no treatment, no help and running out of ideas. I have another neuro appt this Thursday but I’m scared of seeing him again after last time saying my symptoms were due to a disc bulge in my lumbar spine and sending me for another MRI which is since been cleared. the neuro-physio I saw said I was showing a clinically isolated syndrome but without presence of lesions can’t get a definite diagnosis of MS. Anyway I’m gettin off track (memory like a sieve atm). your courage is inspiring to me, I find myself checking in every few days to see how your coping and get ideas where and when I can to get through it. Sending a lot of love and thoughts your way. xx Mel

    • Hi Mel, thanks so much for your comment, you got me all teared up. Did they use contrast dye for your mri? Lesions tend not to show up without it (they’re so hard to find in the spine too). Getting through the limbo phase is rough, no doubt, but it can be done. I really hope for your sake that its not ms, but I hope you get answers soon. Thank you so much for the kind words, ill be keeping up with your blog for sure. Big hugs and lots of luck to you xx

  2. softballmel permalink

    No they didn’t use contrast, which is a sticking point for me. i tried to ask my neuro about it last time but he brushed my comments aside and said it was all my lumbar spine (even though that doesn’t explain 1/2 of my symptoms). I’m hoping he’ll be a bit more talkative this time and I will be better prepared for what I want to ask. last time was rushed as I got in on a cancellation appointment so I didn’t have to wait until mid november for the 1st consult. Hope you have a good day (I should be asleep- clearly i’m not stupid spasms) xx

  3. Oh man…if you can, print out the images from this site:
    That shows the difference between no contrast and with contrast. No contrast: looks normal. With contrast: oh look, a lesion. I really don’t understand why any neurologist would order an MRI without contrast for someone suspected of having MS. It makes no sense.I’m going to bring the images from that site and my disc to my neurologist. She seems like she’s eager to push MS aside and settle on fibromyalgia, which while in itself is a horrible condition (not to mention the social stigma attached to it), it does not explain all my symptoms (especially the dreaded MS hug ugh). Have you made a list of questions and concerns to bring with you to your next appointment?
    Hope you managed to get some rest. Spasms are horrible for interrupting sleep and just completely ruining a day 😦

  4. softballmel permalink

    Wow those images definitely show it up. I found out today from my GP that the neuro who has taken over my case isn’t the one he would refer to for clinical diagnosis (originally referred for nerve conduction studies). I’m hoping that means I have more chance of asking for a second opinion if Thursday doesn’t give me anything to go on. I’m slowly working on a list of questions. I need to find someone to come with me to remind me to ask my questions last time I got hit by cog fog because of the heat and forgot most of what I was told. I hope your day has improved xx

    • Ah, cog fog. Gotta love it eh? I usually do the top half of a page for history notes for the nurse, then the bottom half for questions/concerns for the doctor. I leave it sticking out of the little pocket inside my purse so I see it when I’m fumbling around in there looking for something to do in the waiting room 😛 The nurse always seems happy to see the note, much easier to take a good history when the patient has every written down with dates and whatnot.
      Day got better for the most part (well, mentally, not physically) but I ended up getting angry at my math homework and went to bed 😛
      Best of luck on Thursday, I’ll keep my fingers crossed for you!

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