All Journal Entries Journals
Sort By:  


May 10, 2012 - 2 comments




Diplopia that I had hoped was just a mini-flare kind of thing is still here 10 days or so later and getting worse, not better.  Add to that the fact that two fingers on my right had and my right toe not moving on command yesterday for the first time and I'm suspecting a new flare is trying to sneak its way into my life.  

Yesterday I had an appointment with my neuro that I have to drive an hour and a half to see.  When we got there they looked at us oddly and asked if we hadn't received a call that the neuro was not in.  No, we had not received any calls and no one else was available to see me.  So, another hour and a half home in blinding sun and 80 something degree weather and still no answers about whether this may or may not be the beginning of a flare.  I have a new appointment for next Wednesday.  We'll see how it goes until then.

Eyes: killing me and right eye twitching/moving (weird, I know), colors washing out AGAIN in one eye
Moments of vertigo
Visible cramps/spasms on my ribcage
Stuff not working
Multiple parts buzzing and tingling
Stabbing head pains in several different points

I hope that this time someone will have the courage to give me a CD diagnosis.  

*bangs head on desk*

Now to think of something positive... My blood pressure is back to normal after being out of control from Prednisone.  It was up to 180/140 at the highest and 150/110 as an average before I started taking hawthorn.  I've been taking it for about 2 weeks and I'm back to about 120/80.  Seems it might have actually helped.  I've also lost about 2.5 kg in the last 3 weeks for unexplained reasons.  I'll take that one though! :)

What is normal now?

Apr 19, 2012 - 0 comments

Chest Pain







So I've been slowly feeling better for the last few months with the exception of a few weeks of being down after overdoing it.  I went back on my own diet, not the crappy one the dietitian gave me and have since lost the kilos that she caused me to gain.  I keep hoping that I'll lose these last few issues, but I have to wonder now if this is just the new normal.  

I can deal with everything fairly well, just wish I could get past this chest pain.  The cardio workup came out clean and the cardiologist innocently asked if I'd talked to a neurologist about my pain.  Ha!  The neurologistS all insist that there is no reason for pain here.  If someone would tell me they knew the reason it might make me feel a bit better, but as it is, not knowing is kind of a drag.  Since it's flying under the radar I guess it looks to me like it could still be anything.

In the meantime, the tremors are under control.  My eyes are recovering finally.  And I'm done with the vertigo and L'hermittes as well it would seem...  hopefully not to be repeated.  

One thing is for sure, this new "normal" is quite an adventure!  


Mar 08, 2012 - 0 comments trying to creep in today.  

*Via tremendous pain in my head.  The doc says I have increased intracranial pressure from taking prednisone.  Did not need another issue.

*Via symptoms coming back and persisting.  Right forefinger not working well today.  Seems like it would like to join the left one in tingling/zapping as well.  Chest pains are trying to crush me, but with no dx: no rx and no relief.

*Via husband not understanding.  I would like to stay on top of things.  I want answers.  He wants (again) to wait and see.  Why isn't he worried that I'm falling apart bit by bit?  

*Via news from the neurologist that I should try the LP again.  After 4 failed attempts at a tap and with already having high intracranial pressure, should I really be doing this?  Not looking forward to it, but he's giving up on searching for answers for me until I do it.  

*Via an excess of free time.  Made a summer shirt yesterday.  Not sure what to do with myself today.  

Trying to keep my head up and looking forward to tomorrow.


Nov 26, 2011 - 0 comments




First time I was sure about L'Hermittes sign.  Didn't know what it was, but had a clear way to describe it.  Color vision still not very good in right eye.  Trip to ER for crazy stabbing headaches.