Question for those dx'd with "mild MS"

11-01-2006, 04:34 PM

I was dx'd in Sept 2005 with "mild" MS - mild because I have small (but several) lesions, my evoked potentials were completely normal - twice - and my LP was only moderately positive. And of course, the multitude of tests I had for other causes of severe L'Herrmite's were all negative. Over the past 15 years I've had other "episodes" that certainly could have been MS, but nobody ever suspected it until last year.
I've had almost exclusively sensory sx (with the exception of essential tremor, which has been a problem for at least 15 years). I still work full-time. Cognitive problems did threaten my job for a while, but since I've been on Copaxone (1 year this month) I've actually improved in that arena.
While there have been some rough patches this past year, I've come to terms with the MS diagnosis. I've decided to LIVE, and to not let "mild" MS rule my life.
Sorry it took so long to get here, but this is the question:
Did you have an attack that made you doubt all over again? Did you think, "This must be something MUCH more ominous and deadly"? Did you think, "I've supposedly had MS for a long time, but NOTHING before has been this scary!"?
I'm asking because my left arm has been "going to sleep" for the past 2 weeks and it keeps getting worse. I'm having progressively worse pain in my left upper leg, I'm getting scared.
Yes, I'll see my doctor soon - just have to make a trip to MN to check on my brother (getting out of the hospital tonight after a week - raging staph infection - damaged his ankle.)
Anyone with insight, I think all I need is a little "calm" for a minute!
Thank you to all of my angels -

11-01-2006, 06:37 PM

Lilc,

I'll be honest this disease scares the crap out of me.My recent attack left me with a hearing impairment,I have lost 35 % of my hearing in both ears.The nerve damage is permant.But it could of been worse.
My first attack effected my vision and my right leg.Now I wear a leg brace.I have my good days with that leg and I can have really bad ones.
Lilc,I had 2 lumbar surgeries in one year seven years ago,and I thought they were the worst thing I would endevor,well I was wrong.I can say that this disease has kept me on my toes and more aware and I refuse to let it slow me down.Oh yes I have really bad days,I can barely do stairs,I walk like a drunk,it takes me awhile to accomplish things my hearing sucks,my vision sucks,my memory is bad,but I refuse to give up or give in.
Its okay to be scared,this disease terrifies me,but I don't let family members know.My mom worries her self sick,she's getting up there in age.I have 2 sisters that are nurses and they drive me nuts.The one states the MS will cripple me and the other one wants to be over protective.
You really need to see your DR.Did you find him?
I understand you wanting to see your brother after his illness.
Your not alone with your MS or your fears.I think the majority of us have felt or feel the way you do.

Prayers to you and your brother

Toni

11-02-2006, 04:33 AM

Toni, thank you - I know this hit you HARD right out of the gate. I so admire your strength, courage and tenacity!
And I DO KNOW that it can be a bad idea to let family and friends know I'm scared - if I share anything it is that I'm annoyed.
I'll be seeing my neuro this month, so that will help!
I noticed yesterday that I could apply pressure to my thigh muscle and that stopped my limping. So I bought an Ace bandage, will try that today, see if walking is easier.
Oh, and my brother got out of the hospital last night. He still has to do IV antibiotics for a couple of weeks, but we pray he's through the worst of it!

11-02-2006, 03:10 PM

Lilc,

If you feel you are in a relapse don't wait to long.The steroids could reverse the symptoms you are having.There ain't nothing worse than these muscle cramps/spasms.Mine seem to be permanant.The muscle pain will bring ya to your knees.
Lilc I was going through some old medical notes and found out I had partial transverse myletits in the lumbar ,back in 1998.geez that would explain the not being able to walk on my right leg for 11 months.I thought it was do to the back surgery.This could explain the long term problems with my leg.I'd like to kick that neurosurgeon in the butt.
I hope your broher is through the worse.

Toni

11-02-2006, 09:19 PM

Toni: Seems you are single-handedly holding up this board. Love ya!!!

When I first got here, there were several "regulars", with a variety of experiences. I swear to God, I wouldn't have survived without them. These days it seems you are the only diligent respondent - YOU are now the ANGEL of this board!!!

I've read your experience, followed you from your beginning here. What you have been through is so far worse than my experience. Yet you offer encouragement to me (with my relatively petty sensory complaints).

Right now I'm having my FIRST really scary sx. I can't thank you enough for being a ballast for my "rocking boat" right now. You prove my Pastor's proclamation: "You don't have a TESTIMONY until you've been through the TEST!"

THANK YOU!!!!!!!!

11-05-2006, 08:18 AM

I too have had mild MS. Is there such a thing? I first was diagnoised in 1993. Was young and ignored it and went almost 10 years with no other symptoms. Then in 2003 it reared its ugly head and I went on Avonex. Hated that. Again I went into denial. The last relapse, in August, forced me to start taking Copaxone, which I love. I have been lucky but the uncertainty on this disease is what is scary to me. Just keep living and taking care of yourself. That is all we can do and pray for the cure.

Question for those dx'd with "mild MS"

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