U'r Worst Symptom/Best Solution

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Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 5/10/2008 11:51 AM (GMT -7)   
Hey Everyone
Deb's great thread on the best books/resources got me thinking. I wondered what parts and pieces we've all gained from these books as well as personal experiences thru daily life with MS. We have a lot of new members...some newly diagnosed...so i hoped we could all just put our worst symptoms and how we've dealt with them here. Maybe just create a list of those things to possibly expect and what we've found that helped most with those probs. Spend some time on this and hopefully we'll have a nice resource for each of us to look to for help as needed. Thanks to u all in advance!
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

Regular Member

Date Joined Oct 2007
Total Posts : 343
   Posted 5/11/2008 6:01 AM (GMT -7)   
I like this too Rhonda, I know I overdid it yesterday (yardwork and totally overheated but the yard looks wonderful!) but today I'm paying for it dearly!

So what works for the excessive muscle ache, fatigue and swollen inflamed feeling I have today? I've done the pain relief and muscle relaxers at bedtime last night and slept well.. but this morning is rough. It'll most likely take two days to overcome this one. Most of the time I ride it out... any suggestions?
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

Forum Moderator

Date Joined Jan 2007
Total Posts : 3552
   Posted 5/11/2008 8:05 AM (GMT -7)   

My worst symptom is the chronic vertigo that I have.  It never leaves me.  It cycles up and down a bit but never totally goes away.  I manage it by being careful in every step I take.  I must look where I walk; there is no looking over my shoulder and walking straight.  I don't take anything for it because there is nothing that helps.  If it is really bad then I go to bed.  At work, when I am teaching, I keep one hand on the white board so I can turn and talk to the class then turn and write on the board.  I also use an overhead projector.  I can sit and use that and not have to turn and then turn back again.  For me managing means adjusting the way I do things.

Love and prayers,

Gretchen       co-moderator MS board       diagnosed with MS July 2006

Motown John
Regular Member

Date Joined Jun 2005
Total Posts : 475
   Posted 5/11/2008 9:20 AM (GMT -7)   
Sunday noon
Hello Miss Rhonda:
One though 5 on  my list of symtoms:
And no one can understand our fatigue unless you are another MS patient.
Right everyone?
Motown John
who has to go lay down.....because I am tired!!!
DX'ed June 21st, 1987

mystery reader
Regular Member

Date Joined Jun 2007
Total Posts : 257
   Posted 5/11/2008 12:18 PM (GMT -7)   
It is difficult for me to pinpoint my worst symptom. It seems to depend on the day. On some days it is fatigue, on others it is muscle spasticity, and on others it is burning/tingling pain. I suppose the one that annoys me the most is the stiffness in my leg. It means that I need to use a cane on most days when I go out and I cannot walk too far without pain and/or heaviness descending. So it limits me in terms of what I can do. (No long walks on the beach when I was on vacation or being able to shop or go on a walking tour, etc.) The only solutions that help some are stetching several times a day and taking it easy. I rarely take baclofen, but may ask my neuro about increasing it if it would allow me to do more.
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 5/11/2008 12:46 PM (GMT -7)   
Hi All,
I have to say that i think the symptom that is most bothersome for me is the one thousand pound leg of mine. It really bothers me. I trip and have to think about every step i take. There is really nothing particular i do to deal with it. I just try to strengthen it the most i can and stretch alot. I just got a prescription for Provigil, and it is helping i think a little. The worst too, i think is the constant reminder that i have this disease. There is not a moment that goes by that i dont have a reminder of it. The heavy leg, the cane, the numbness, the burning,the balance problems, etc. There never seems to be an end to it.  This is the hardest thing about this disease i think. You try to find relief, and sometimes you do, but unfortunately not for long. I have a hard time with this, like im waiting for the one day i am going to wake up and its going to be all better, like the flu or something. I guess it is a stage i am in, being diagnosed w/ a chronic illness. I know what i have and i know it is chronic, but i just cant stop looking for the magic potion that is going to cure this, or make it go away. It sounds like i am in denial, and it probably is a stage we go thru. Its Acceptance i guess what i need to get to and i  guess i cant yet.. But it is hard to deal with for me. I struggle w/ this alot. How do i deal with this? Having you all to listen to me, help me, and support me when i need it most. Thanks for that, everyone!! It makes a world of a difference.

Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta

Post Edited (Sweetlydia66) : 5/11/2008 9:12:32 PM (GMT-6)

Regular Member

Date Joined May 2008
Total Posts : 88
   Posted 5/12/2008 7:55 PM (GMT -7)   
Hi everyone- As I was trying to decide which symptom of mine is the worst and couldnt...I read your posts. It's the constant reminders yes Lynn- I also never seem to have a day anymore (though I did for a couple of years) where I can forget that I have MS. But the worst for me is the unpredictability of those reminders. I never know what's in store!
I was explaining to my mother- It is not like robbers breaking in one night and cleaning out the living room and taking the car and I deal from there and try to recover (like a heart attack or stroke might be?). It is more like a pack of leprachauns that sneak in at random times and swipe things. Sometimes it might be something I dont' use often and so I dont' notice it right away (when's the last time any of you tried a cartwheel?). Sometimes they bring things back after awhile, maybe slightly damaged. They might take something small (a little spasticity) or clean out half the house and take the treasured family photo albums (memory loss). Sometimes in taking something large they uncover small treasures that I've lost in the clutter of life. I try to find grace in that- For instance when I couldn't drive I had more time to spend sitting with my children. So that is how I cope- looking for the silver lining and writing every night in my gratitude journal 5 things I am grateful for that day. But don't get me wrong, I get highly frustrated and annoyed and angry at the leprachauns- at best they are mischievous and at worst they are mean. I would not be sad if they took a vacation for a while and I could have even a week symptom-free. Willow

Forum Moderator

Date Joined Jan 2007
Total Posts : 3552
   Posted 5/13/2008 6:13 AM (GMT -7)   

Wow Willow,

You have really said it here.  It is that horrible unpredictability that is so difficult.  My husband lost his foot years ago, and he so understand this.  He says the he know what his disability is and he adjusted to it years ago.  He knows that my world (our MS world) is a world of constant adjusting and that can be so exhausting.  Your parable about the leprechans is so good.  I am going to use it when trying to explain this to the few people in my life that want to know what I am dealing with. 

Thanks so much for this post.

Love and prayers,

Gretchen       co-moderator MS board       diagnosed with MS July 2006

Regular Member

Date Joined Oct 2007
Total Posts : 343
   Posted 5/13/2008 3:14 PM (GMT -7)   
I like the analogy of the leprachauns too, Willow... how very appropos to relate.
I think sometimes I'll scream if one more wonderful, loving friend says, "face it, Deb, we ALL get those kind of aches and pains and problems, too, ya know?" When they ask me what the symptoms are and I'm trying to explain excrutiating pain, violent spasms and frankenstein stiffness, electric shocks and jolts, blurriness, misjudgement in vision (I'm already blind at -6.50) and the extreme fatigue only we can understand and one more friend says, you know you ARE over 50 now!
I want to scream and pounce and jump up and down like a maniac! I want to wiggle my nose like Samantha of Bewitched and instantly trade bodies for a week (my worst week mind you) and just give them a taste... then of course take it back as I'd never saddle anyone with this, much as I cry, and wish and wonder why I know it's mine and God will get me thru every bit of it. He's just got a lot of grace to pour over me for now cos this is the part that's driving me nutsier than the symptoms!
Maybe we should have a thread on dealing with our loved ones and friends? Some of you who have so much experience could probably help God with my grace I'm sure... I know there's got to be a better way to handle my fury when I hear those famous words that they know how it feels and it's all "normal".
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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