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SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/12/2010 1:02 AM (GMT -6)   
Has anyone experienced heavy leg feeling with MS? Both my legs feel like they are weighted down by concrete or weights and I can't walk very good at all. They feel so very heavy. Is it a MS flare up and would steroids help?

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 4/12/2010 10:56 AM (GMT -6)   
Yup its one of my worst problems. Also I have a kidney problem problem that wastes electrolytes and it also drains the energy out of my arms mostly.
 
Yes feel like I am draggin my legs at times. I am getting home PT from a bad exacerbation a few weeks ago and as much as I am improving.. my legs tire so easily that they shake. I have to sit down and sometimes need to lay down.
 
How do you handle this?
 
Warmly, Jan

SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/12/2010 11:29 AM (GMT -6)   
I am going to my dr. on Friday but not sure what can be done. I can't walk very good at all and not for any length either. I just sit down. I have to...my legs feel like they weigh 500 lbs. each! I haven't had this before and I am wondering if steroids or anything can be done for it. I don't have it in my arms..just legs. When were you diagnosed if I may ask?

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 4/12/2010 11:45 AM (GMT -6)   
HI Sweet and sour.. cute name
 
If you are asking me I JUST got diagnosed Feb 10 after years of being followed by another MS specialist. He first told me I for sure have Epilepsy. He knew I was not so sure about the MS diagnosis until I as in a full blown exacerbation and another brain MRI showed more lesions.
 
BUT...he is sending me to a MS clinic to get another opinion and if and how I can take meds for this. I feel I am still in limbo though.
 
How are you doing?
 
Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


barbarann
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 4/18/2010 9:33 AM (GMT -6)   
I have yet to be officially diagnosed with MS but have had all the symptons since 2004 although  I have had several visits to a neurologist since then. My legs have felt heavy like yours almost since day one and have only gotten worse.  Walking even only a few feet is getting almost impossible The only medication recommended (after two years of this) was baclofen which I take 8 tablets a day - only helps slightly. Up until a few weeks ago I could still drive but now I can't feel the gas pedal so have stopped.  I am still working full time so it has been hard depending on others to get to and from work.  I have a scooter at work so that has been the only way I could keep working.

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/18/2010 10:06 AM (GMT -6)   
I get the heavy legs,It is mostly the right one.It gets so heavy I cant move it..They have given me xanaflex to try and limber it up.But it still does what it wants.I have an A.F.O. brace too even that drags too.I had a fall because my left leg went but the right one stayed put ended up breaking 3 toes.It isnt pleasant..Barb

diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 


SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/20/2010 8:28 PM (GMT -6)   
Hi Barb
Sorry to hear about what you go through but I can sympathize. My legs feel like huge concrete blocks are attached to them and it is so hard to walk and now it is causing pain in my lower back and hips. Does your steroid treatment work for you?

Pennye

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/21/2010 7:07 AM (GMT -6)   

The steroids do help yes.But I will be off of them soon once I start the tysabri. Which will be in 2 weeks.Steroids helped BUT they cause problems of their own.Both legs would get HEAVY when I was on avonex..Day after the shot was terrible.Now it is just one (right) and it is stiff and heavy.Just  drags.           Barb

 


diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 


SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/21/2010 7:27 AM (GMT -6)   
That worries me because I am suppose to co on Avonex now. Does that shot hurt? Because it goes into the muscle, more than the skin shots? I was on Rebif but had terrible injection reactions. I was thinking about copaxone but didnt want to take a shot every day. I appreciate any information you can give me on this.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3123
   Posted 4/21/2010 8:20 AM (GMT -6)   
I am sorry you are having a rough time right now.  I don't have any experience with avonex.  I do know someone on it and she likes it fine.  I have been on copaxone for about 3 and 1/2 years.  I have done real well; minimal progression.  I don't mind the shots at all.  They are very easy and I don't have much of a local reaction.  I have no side effects at all from it.
 
You may want to ask about ampyra. It is a new med just released that is supposed to aid in walking.  It is an oral med that is to be added to a regular MS med therapy like avonex or copaxone.  Good luck.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/21/2010 12:17 PM (GMT -6)   
The avonex shot really doesnt hurt.I would have stayed  on it but I was having too many flareups.So I tried rebiff and could only do a half dose. Still too many flareups.Dr. said the a,b,c,r drugs were not for me.So that left novtatrone (chemo low dose) or tysabri so I am going to give the tysabri a shot.
 And I wont be doing the steroids any more either.When I did flare and wound up in the hospital 5 days of steroids got me moving again..So getting back to the avonex it does not hurt..The needle is a little overwhelming but you will get used to that and once a week is so much better..Barb
diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 


SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/21/2010 6:01 PM (GMT -6)   
I was considering copaxone and now I am really wondering...I guess you never know until you try one. Can I ask how long of time do they give you on one of the shots to see if it is working? Do you just go by your flare ups?

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/21/2010 6:30 PM (GMT -6)   
I was on avonex for like 12 years.Except for the heavy legs I thought all was good. I wasnt flaring.The dr.put me on steroids i was on them for 31/2 years. Then I had 3 fairly serious flareups got a new dr. he felt the avonex was no longer working.I was only on rebiff for 8 months.I couldnt tolerate the 44 mg's.so he switched me to 22 mg's.In the 8  months i wound up in the hospital 3 more times.With very active mri.They felt interferons werent helping.My dr. says there is always something to try.I questioned copoxone since it is not an interferon but he didnt think that would be a good fit either but I could try and see.But after long hard thinking I decided to try tysabri.I couldnt just do nothing.He said I should only be on that for 18 to 24 months.And then the oral pills should be aproved.I have to do something I have been off rebiff for a month and I can notice a difference.I definitley need something..It is a hit and miss..But worth a try....Barb

diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 


SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/25/2010 11:10 AM (GMT -6)   
I received my 4 free shots of Avonex yesterday and I have to say the needle scares me just looking at it! It is pretty long and not that thin...now I am worried Iwon't be able to do this...any adivce? I appreciate it!

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/25/2010 2:34 PM (GMT -6)   
Yes the needles are overwhelming.It helps to ice up the area before you inject..I really think you will be surprised that it really "looks" worse than it is.Have you tried asking somebody else to give you the shot?I had somebody else give me mine.I also found the top part of my legs were the best places to do it.Good Luck..But I really think you will be fine...Barb

diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 


SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/25/2010 3:03 PM (GMT -6)   
Thank you so much for your advice and help! I am still so scared. I would like to find someone else to give them to me but not sure who. Do you get an auto injector with them? Can I ask how long it takes to give/get one? I am just overwhelmed by all this and I still just can't believe that needle! Did you get any of the reactions...like the flu like symptoms and if so how long did they last? Again thank you for all your help.

SweetnSour
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 4/26/2010 10:18 AM (GMT -6)   
The nurse just called to schedule a time to show me how to inject the Avenox...but she said there is nothing to inject with...just the needle itself...with my Rebif I had an injector but this has none and the needle is so long...how is this going to work??

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/26/2010 9:14 PM (GMT -6)   
There isnt an auto-injector with avonex. After you get used to it it doesnt take long at all.My side effects at the time was the heavy legs the day after the shot.That had to be a side effect. But now they say it was the interferons..A frriend or anybody could give it to you just make sure they can be there when the nurse comes.And you will adjust to the needle after you get it a few times...Good Luck..Barb
diaganosed 1983
rebif
steroid infusion every three months for three days
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
inderol 
 

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