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Multiple Sclerosis Community
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738075 tn?1330579444

Hi, just checking in...

I've lurked occasionally in the last few weeks, but unfortunately, I've been working too hard, both at work, and keeping my own health up, to actively participate.  I'm sorry for that.

Truth be told, I've still never recovered from my last flair last November, and I'm weak, spastic and exhausted.  

I finally got an appointment with an MS specialist up at UCSF.  I have just two pressing questions for her.  
1) When does the "remitting" part come in?
2) Am I transitioning to a secondary progressive phase?
I know they'll probably do lots of neuro exam stuff while I'm there.

My symptoms haven't relented, and they're slowly, insidiously getting worse.  I played my guitar a whopping 12 minutes yesterday!  A far cry from the 2 hour solo gigs I did just a year ago.

I'm trying to take this one day at a time.  I woke up, got dressed, did the two goals I set out to do today.  In my book that's a good day.  I'm learning not to compare myself with last year's self.  I'm where I am today.  

I still have composing ideas for guitar.  I still do my Yoga practice with what I'm able to do today.  I rode my bike a while last Sunday on the flats.  It's actually easier to ride my bike than it is to walk.

Thanks for letting me spout.  My heart goes out to each one of you as we share our struggles and occasional and sometimes surprising victories.
With Love,
Guitar_grrrl
10 Responses
560501 tn?1383616340

   Hey there  :)
     I am sorry that you are going through this emotional as well as physical
time right now. I can soooo relate!

    I guess we are in the same boat and I will find out more in June about it going from
RRMS to SPMS.   Sorry I can not answer your question but rather let you know that
I am also a bit confused about when a "remission" should come....As I have not
gone back like I used to but rather stay the same and /or get a new sx or the original ones progress to some degree...and never go away.

     You are awesome for staying active despite of the MS!!!  ANd for not looking back at last year only to find out that you are not that person you were then.....I think for me, that is ONE of the hardest parts  :(

I hope you get some answers at this coming visit.
Take Care,
~Tonya
293157 tn?1285877039
glad your back and gave us an update on how your doing.. it's been awhile and we miss you.

when is your appt.  I'm finding that my progression is slowly getting worse.  My hubby and I notice little things and I'm alot more tired out easily.  My balance is getting worse and my legs get weak easily now.

stay in touch and hope your appt goes well.. let us kow
take care
wobbly
923105 tn?1341831249
Great to see your thread G-G :))))

When is your appoint.?????

Your right, we can't look back to where we were last year, or whenever a last flaire left us debilitated.

Good to hear that your still working hard, yoga, on your bike - it's the guitar playing hey?  But at least you managed 12 mins -- maybe tomorrow or today it could be a bit longer?  

We have to think positive, and your thoughts on composing sounds like another good idea.

Hugs,

Debs xxxxxx

Avatar universal
Hi, GG. Good to see you. I'm sorry you're not really up to snuff, but you have a great attitude.

Please visit here more often.

ess
667078 tn?1316004535
Sorry things are not easy. I really wish you could have a long remission and do whatever you want.

I am glad you are composing.

Alex
572651 tn?1531002957
Hi GG, It sure is good to see you check in, even if you don't plan on being here often.  We all know how life can get in the way and keep us from doing the things we really want to do!

It stinks that you still have not found the remitting phase of your disease - I hope the doctors have some answers for you.

be well, Lulu
738075 tn?1330579444
Hi, and thanks for all the kind thoughts, everybody.

My appointment is June 30.

I'm re-reading _The Tao of Pooh_  :-)

(((Hugs))) to all,
Guitar_grrrl
405614 tn?1329147714
Hi there, good to see you.  I haven't been on the forum much, so its good that I checked in when you did.

I just got out my copy of The Tao of Pooh.  I haven't read it in years.

I'm wishin' you some remission.

Hugs,

Kathy (Fluffy says hi, too)
739070 tn?1338607002
GG,

I can totally relate to the "no remission" stage. I have questioned my neuros about this and one says SPMS and the other says no.

I just know that the only time I've had any truly good time was 3 weeks in January. Am planning to see a pain management doc soon to rethink all my meds and perhaps find some way to increase my energy and decrease this early  muscle fatigue.

I like your attitude of setting small goals each day and then concentrating on those instead of the big picture, which often is too much to encompass one's thoughts on any given day.

Take care of yourself and pop in when you feel like it.

Hugs,
Ren
987762 tn?1331031553
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[[[[[[[[[[[[[HUGS EVERYONE]]]]]]]]]]]]

JJ
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