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Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 11/5/2007 11:36 PM (GMT -6)   
I have just passed the one year mark for taking copaxone.  I have taken 374 shots of the stuff.  I am feeling pretty good all in all.  I am so happy and thankful to have you all here.
 
I was thinking after reading another post about all the different symptoms that eveyone experiences with this disease.  I was wondering what you consider to be your worst symptom and what strategies do you use to deal with those. 
 
Thanks for this.
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/6/2007 7:48 AM (GMT -6)   
Probably the worst symptom(s) is the loss of regular bowel and bladder control.  While I am taking meds for bladder control..which work most of the time, and am on a "bowel program" that has helped with that, it will is always a challenge, as loss of those two body functions are "not acceptable" in the adult world, not to mention messy when they go awry!
 
So I take meds, try to follow the bowel program (not always successfully), use Depends, find out where the bathrooms are (and whether I can get in to them!) wherever I go (and don't go places where I can't!), and otherwise worry about whether I'll be in control every day.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 11/6/2007 11:31 PM (GMT -6)   

Uppitycats,

Thanks for responding to my unpopular thread lol.  I have those same issues but I believe to a much lesser extent.  My biggest problem is my chronic vertigo.  It showed up late May in 2006 and has never gone away.  It has been so bad that I could only wall walk and I was so very nauseous.  My neuro claims that chronic, long term vertigo is not very common and she had hoped that it would eventually diminish but alas that has just not happened.  It seems that it is here to stay.  My way of dealing with it is to ignore it.  If it is really bad and I am sick from it, then I might take some meclezine. 

Thanks again for sharing.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/7/2007 2:24 AM (GMT -6)   

Hi Gretchen,

We are happy and thankful to have you here too!!  When you put it as "374 shots" that seems like a lot huh?  Good for you for sticking with it, I know not everyone does.  I'm sorry to hear about your vertigo, I know that gets really tiring after a while.

I've been thinking today about what to answer with as my worst symptom and was having trouble deciding.  I think my vote is for fatigue.  When I do get some energy it has to be very carefully delegated or I'll rob the next days energy, or many days for that matter.  As far as how I manage it?  Lots of rest and a very reduced work schedule.  I have a bit more energy since coming off Betaseron, and hoping Tysabri will improve it even more yeah

Take care and have fun with Sunny!

 

 

 


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


anniebooboo
Regular Member


Date Joined Jun 2007
Total Posts : 53
   Posted 11/7/2007 3:28 AM (GMT -6)   
I have lots of annoying things happening on a daily basis, but the symptom that drives me insane is this weird feeling I get in my throat on a regular basis, where it feels as though the muscles in my neck are constricting and choking me. I get so tight in my throat that it even effects my voice and I can barely speak or swallow. It comes and goes but despite much speculation, I simply cannot findany triggers or pattern to it's occurance. Doctors have called it "globus hystericalis" (sp), but I don't fully accept that diagnosis (ie - caused by stress/anxiety). It may have some link to painful reflux that I often get as well. Anyway, it remains a mystery, but I have a theory that it may be the MS hug in a different region to where most people experience it. I would love for this symptom to go, because it truly interferes with the quality of my life.
Regards,
Annie
(PS - I'm not diagnosed, so may be dealing with something else entirely. Actually, sick of everything to do with my weird body today!!!!!!)

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/7/2007 6:24 AM (GMT -6)   
Hey G!

Ok, i'm not dx'd nor do i fully believe i may have ms anymore, but to try to answer u'r question, i'll tell u my worst symptom that i've experienced...but that is not resident. I have to agree with Shar on the fatigue. When i had it it was HORRIBLE. I've never experienced anything as harsh as that is to daily life and my family's quality of life (not to mention the quality of the life of a lump of lard that i was having). It simply was such a robbing experience. Thankfully it's gone and only briefly does it ever appear anymore. The best way i've ever been able to describe it was that u have no life in u. U have no energy to do anything more than to get to a chair and rest. U must rest if u make the journey from bed to chair...u'r that exhausted. Then u sit and revel in the moment of rest u get until u realize that just the sitting is exhausting to u. U truely don't have enuf energy just to sit. I would stretch out in my recliner and put my arms over my head as i did so and just lay there. In no time at all i had not even enuf energy to keep my arms from sliding down and hitting me in the top of the head. Fatigue is the worst. Beyond that there has been the jello legs and the eye pain. Of course many more symptoms, but those are the remaining two that stand out. Jello legs feels exactly like that. U feel as if u are going to fall because u'r legs won't maintain the stiffness needed to support u. Kinda like after u've exercised a lot more than u should and u'r legs just want to pull in...but it's not a pulling in feeling...just a really really weak feeling. They feel soft if that makes any sense. U all know of the eye pain i have...now come to be known as eye migraines. That's HORRID. I HATE HATE HATE that, but i don't know that it's really and truely a part of this other junk. So there u have it...my worst symptom...plus two. ;)
rhonda
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?*


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/7/2007 5:10 PM (GMT -6)   

Hi Gretchen,

 

I think you know the answer to this one for me, but I’ll post it anyhow. While fatigue is a close second, I have to agree with you and say vertigo is my worst symptom. I count myself lucky that my daily issues with it are more a feeling of being off balance and slightly dizzy, rather than true spinning sensations. However, when it does become the spins, especially to the point where I can’t move because I can’t tell up from down and I get “stuck” places, I find it truly miserable and incapacitating. Thankfully, this hasn’t happened in a while.

 

How I deal with it..hmmm…I take meclizine sometimes which helps with the nausea but not the actual vertigo, and I try and go to bed and not move when I am really spinny. I also find that bracing myself in a corner sitting up with my eyes shut helps the spins, as the solid walls seem to help my brain realize things are not actually moving. I touch walls as I walk and often even when I stand for the same reason, and find that helps keep my everyday level of dizziness manageable.


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 11/7/2007 6:46 PM (GMT -6)   
I am having a tough time picking one as for me it depends on the day.  Sometimes it is the pain in by rib cage and back which never truly goes away and on other days its the muscle stiffness and spasms in my left leg.  Then fatigue is also a major pain.  For today I am going to choose the pain I am experiencing with my rib cage and back.  I just took a clonezepam so maybe it will help.
Barb/mystery reader
Diagnosed April 2007


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 11/7/2007 8:46 PM (GMT -6)   
Hi everyone,
First off i have to say, this was a great idea Gretchen. It's awesome to relate , you know? Although i experience a bit of this all, my worst symptom is the extreme numbness in my feet. They are so numb that it feels like when you get novacain (sp?) at the dentist and you can't feel your face, or when your leg falls asleep and you can't feel it until you shake it to get the feeling back. Unfortunately there isn't no shakin this one off. That is how my feet feel and half way up my calf . It drives me bananas.Some days it is ok, but it seems as tho the more fatigued i get, the worse it gets. I hate it . I try and do alot of stretching and it does help but it is the worst. It certainly makes walking interesting when you can not feel the floor, LOL.
Well have a great night
Love
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 11/7/2007 9:47 PM (GMT -6)   
great (weird to say that) post Gretchen. Ok so Fatigue, backpain/migraines, memory loss. I think not remembering stuff that i knew so well is very hard for me. I was a sociologist and LOVED the research and all the history but I can no longer retain a ton of stuff. I asked the neuro and he said I have a lesion in the memory part of the brain I think. oh and I had total hallucinations (which neuro decided was a drug combo) that freaked me. ooooooooooh and peeeeeeeing alllllllll the TIME!! ok I 'm done!

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 11/9/2007 6:35 AM (GMT -6)   
Great post G!  It's interesting to see how the symptoms effect everyone.  For dh the worst symptom is the chronic pain, particularly the burning.  No luck with the traditional MS pain meds unfortunately, so we ended up taking him to a pain management specialist for it.  Everything else, aside from the fatigue, he's able to manage or ignore without meds.
 
Hope everyone has a fabulous weekend!
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 11/9/2007 7:11 PM (GMT -6)   
Friday p.m.
 
Good evening everyone:
 
To me, the worst MS symtom is (by far) fatigue.
 
Man o' man.  It is with you the moment you open your eyes til' you go to sleep.
 
And NO ONE can understand the depths of our fatigue unless you are another MS patient.
 
Right?  The last sentence in my application for disability..."...It is 10:30 in the morning...and after after a full night's sleep...I must go lay down as I am exausted."
 
As it is.  John

tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 11/9/2007 10:02 PM (GMT -6)   

John you have said it all!!

Now can you go explain that to my husband!!!!


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 11/10/2007 7:21 AM (GMT -6)   
John, While you are at it , could you please explain this to my family and friends? You know who they are... They are the ones that say they are tired too!
Barb/mystery reader
Diagnosed April 2007


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 11/10/2007 7:58 AM (GMT -6)   
Hey John, Theresa and Barb,
 
I feel very lucky to have only very minor fatigue.  My energy levels have gone down a bit with MS.  I have always had just a ton of energy.  John, this first time you said, " Fatigue is the symptom that trumps them all."  It got me thinking.  And I do believe you are right.  They only thing that for me would be worse would be severe and chronic pain.  But it seems that maybe we do a better job of treating pain.  If you are tired, you can do nothing.  It would be way worse to be tired all of the time then to be in a wheelchair even.  You could adapt to that; learn to do things differently but when you are tired..........  
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/10/2007 8:13 AM (GMT -6)   
While fatigue certainly is a huge challenge...I think it not sensible to suggest that it "would be way worse to be tired all of the time then to be in a wheelchair".

Way tired people can get into stores, office buildings, libraries, schools, and don't have to look for ramps.
Way tired people can walk into restrooms and not wonder if the "handicap stall" is available, and is truly accessible.
Way tired people can drive a regular car without modifications.
Way tired people can move around their house, with or without carpeting, with or without adequate space to maneuver a wheelchair.
Way tired people can do LOTS of things and go LOTS of places that people in wheelchairs can only dream about.
There are meds that can help with fatigue. Admittedly they don't work for everyone, but it's worth trying them out.
Very severe fatigue will sometimes lessen for periods of time when people can feel closer to normal. It's rare that once someone is fully in a wheelchair that they'll ever walk well again.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 11/10/2007 9:16 AM (GMT -6)   
I do not think Gretchen meant to get into a contest with anyone over what symptoms are the worst. She was just trying to emphatize with others. I guess you could argue that the worst symptom is whatever we as individuals are trying to deal with on a regular basis.
Barb/mystery reader
Diagnosed April 2007


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 11/10/2007 11:28 AM (GMT -6)   
It seems as tho everything Gretchen posts, there seems to be a disagreement over, whats up with that. Maybe this is why some new people  post once and never come back again because SOME people can not be supportive only nasty know it alls. I think If you can't say nothing nice don't say it at all, MY GOD! Enough already. Geeesh. Nobody finds it amusing, believe me. Do i sense a bit of ...........never mind.
 
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/10/2007 1:20 PM (GMT -6)   

Hey Everyone

Well i think we are at a place where we'll all need to just agree to disagree. This is a fantastic thread...asking for opinions... and those opinions are per our own personal experiences. I think none here could say they've ever dealt with every symptom nor are they trying to say that. We all have our own feelings as to what the worst symtom is...and that's directly related to what we are going thru or have gone thru. That said, each of us feels our own symptoms/circumstances are the worst...and they are for us. No ill intent was due here nor placed. As close as this community is and as much as we'd love it to be, we are all simply not always going to get along and agree. Please try not to take anything said here as a personal attack unless it clearly is. Please remember that in responding likewise u'r perpetuating the problem. I hope this issue can rest here and we can get on to the original topic again and enjoy just having each other to lean on. Thanks everyone!


rhonda
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?*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/10/2007 4:40 PM (GMT -6)   
Sweetlydia66 said...
It seems as tho everything Gretchen posts, there seems to be a disagreement over, whats up with that. Maybe this is why some new people  post once and never come back again because SOME people can not be supportive only nasty know it alls. I think If you can't say nothing nice don't say it at all, MY GOD! Enough already. Geeesh. Nobody finds it amusing, believe me. Do i sense a bit of ...........never mind.
 

I'm sorry you took offense at what I wrote.  For a post not even directed at you, your anger seems a bit misplaced, but I'm sorry, anyway.  And I'm also sorry you think I'm "not supportive and a nasty know it all".  I really do try to help folks here...obviously I must not have helped you, and again, I am sorry.
 
I hope you're feeling better now.
 
I was not really disagreeing with Gretchen, by the way.  Fatigue really is a challenge for any of us with MS, and some days are significantly worse than others.  It's just that it really can't be compared with paralysis.  Having to deal with both of them, I know...well, never mind. I don't want to be accused of being a know-it-all again.
 
Take care.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 11/10/2007 4:41 PM (GMT -6)   

UppityCats,

I owe you an apology.  I am very sorry.  I have not experienced being in a wheelchair so I really don't know.  I have offended you and I am sorry.  I have experienced fatigue and when I had it I couldn't work, I couldn't drive and I didn't want to go anywhere.  Certainly I do not know what it is to be in a wheelchair, and I spoke without thinking.  Thank you for calling me on it.  I can certainly read the frustration in your words.  I seem to do that to you a lot.  Again, I am sorry.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/10/2007 4:50 PM (GMT -6)   
Gretchen1 said...

UppityCats,

I owe you an apology.  I am very sorry.  I have not experienced being in a wheelchair so I really don't know.  I have offended you and I am sorry.  I have experienced fatigue and when I had it I couldn't work, I couldn't drive and I didn't want to go anywhere.  Certainly I do not know what it is to be in a wheelchair, and I spoke without thinking.  Thank you for calling me on it.  I can certainly read the frustration in your words.  I seem to do that to you a lot.  Again, I am sorry.

Love and prayers,

 

Hi, Gretchen...seems we were cross-posting.

First, no apology is necessary, really.  Please read what I just posted above-- I'm not at all offended, just making my position clear.  You don't really frustrate me, and haven't really frustrated me in earlier posts -- and certainly not as much as apparently I frustrate some others here.  I realize that I am much more disabled than most of the folks that post here. Between my own 24 years of disability and 30 years of working with people with disabilities (which I did before I became disabled myself, and still do some work), I suppose I do sometimes come across as a "know-it-all"..because, frankly, I do know a bit more than some folks who are newly diagnosed, or not yet diagnosed at all. So for that I am very sorry.

Anyway..

continue, folks. What is your most troublesome symptom(s), right now?  Today, I'd jump on the "fatigue" bandwagon...assuming I could jump. :)  Just spent the day doing necessary shopping..only 3 stores...and I'm crashing in to bed after posting this.  One store too many, I told my husband.  If I'd stopped after #2, maybe I'd feel alive right now!

 


 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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