Rough couple of days

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nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/22/2008 7:51 PM (GMT -6)   
Hey guys, 
 
The last couple of days have been rough.  I have been soooo tired and my legs have been soooo tired too.  My walking leaves alot to be desired.  My legs aren't so much numb as just weak and heavy.  Sometimes when I am walking it feels like my left leg is longer or something...I just feel so awkward(sp?). Is it common to have the weakness without the numbness?  Well, the other day my grandmother gave me my late Aunt Ruth's walker to use.  She is so worried that I am going to fall...again...so I promised to use it when I need it.  Don't have a cane to use...that might be a little less conspicuous.  Well, my 7 year old son tonight saw it and asked what it was.  I told him it was for someone to use when they need a little help walking.  It helped when I said it was like when his friend's mom broke her leg a few months ago and had to use crutches.  I wonder if he would feel embarrassed if I need to use it to come and get him from school one day.  We'll see!  I am hoping that any day now my legs will return to normal.  I am supposed to take my girls to the zoo on Thursday... preschool class is going.  Keeping up with everyone might be a little difficult.  :(
 
Oh, my Avonex nurse was supposed to come yesterday to train my husband, but she got sick, so she is going to come Friday afternoon instead and will be able to watch as one of us does the shot.  Ouch!!
 
Kathy
(one of these days I will figure out how to do the signature thing like everyone else...I need to get my hubby in here to help)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 4/22/2008 8:07 PM (GMT -6)   

Hey Kathy,

I am so sorry!!  That is rough.  Yes you can have that heavy, weak feeling without being numb.  I have that a lot in my left leg.  It is not too fun. 

Ok, here is your technology lesson (please know that I am a techno-dummy)

Step one - click on your user name (nursekatb) on that side bar to the left.  Step two - click on the words "control panel" in the blue bar just above there to the left ish.  Step three - click on "edit profile" in the light blue bar.  Step four - scroll down until you see signature on the left.  Type what you want in the box.  Hit submit and you are set!!! 

Good luck!! You can do it!

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 4/22/2008 8:44 PM (GMT -6)   

Kathy,

I am sorry you are going through this.  I too have the heavy awkward legs.  Feel like I could trip over myself.

I got a folding (I think they call it traveling) cane at Walmart.  It has elastic inside, so it can be pulled into four pieces and folded.  Great for traveling.  My girls are the first ones to reach for my cane when I need it.  They sense it first and want me safe.

Hugs,

Debbie


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/22/2008 8:49 PM (GMT -6)   
Hey Kathy

Yeah...those heavy weak legs are very common with ms. I don't have ms, but early on and for a long time after i was having probs, i had those. It's sooo hard to do anything! Standing in one place very long is really hard. Ur legs feel like cement and totally weak! It'd be that and/or the jello legs. Those are about the same...just like u've been on a bicycle too long and u'r legs feel jello-y or like a rubber band...and weak. Hang on friend....u'll get thru this even tho it may not seem like it now.

On the zoo trip...u may want to see if u can rent/borrow a light weight wheel chair or power chair or talk with the teacher/chaperones to advice them of u'r situation and get some rest stops planned. A walker in that crowd will be very difficult! Also, be sure to consider the temp u'll be in. If it's going to be very warm u might need to pack along some cold or frozen water to have on hand.

I see Gretchen has given u excellent instructions on how to get u'r signatue done!!! Bravo g!!! Let us know if u need anything else and take good care friend!
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?*


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/22/2008 9:00 PM (GMT -6)   
Hey Kathy, the walker sounds very helpful...it's like grabbing that grocery cart or shopping cart first thing in a store so you know you've got something to lean on when your legs get weak! (At least that's my basic trick... keep it  close at hand).
 
And yes, I have the chronic weak legs most often without the numbness, numbness is random when it strikes, can never replicate the action to cause it...but, essentially the legs just don't work like they use to. I've even noticed how much they just don't feel like they're really attached to me most of the time. Walking is a concious movement now instead of just something I did because I could.
 
Gotta admit, the disease keeps me hopping (not literally, good gracious that would be a hoot to see! tongue ) and a sense of humor keeps me smiling. Thank God for that!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 4/23/2008 2:49 PM (GMT -6)   

Hi Kathy,

 

I’m sorry you’ve been having a hard time…the leg heaviness can be really uncomfortable. I don’t have ms, I have cis (one “ms” attack) but I do have a lot of that nasty heaviness and weakness. Mine is one of my symptoms of fatigue, and it definitely can be very draining. I can go from walking okay to struggling, and it’s just the fatigue kicking in. The only two things I’ve found that help are rest, and also the fatigue med, provigil. I’ve just recently started taking provigil and it’s not without side effects, but I do find that it’s helping me some with the “concrete limbs.”

 

I hope your first injection goes well on Friday! Hang in there, and let us know how you do.

 

Sunny

 

Edited to add: when I was having a lot of problems with weakness in my left ankle/foot, I found that wearing somewhat loose but slightly stiff leather boots gave me a bit of support and improved my stability.

Post Edited (Sunnycitrus) : 4/23/2008 4:05:14 PM (GMT-6)


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 4/23/2008 2:58 PM (GMT -6)   
kathy, Good luck on Friday. I also have to deal with the heavy leg feeling. Mine is in my left leg only. I have found that using a cane also helps. Get a fun one and think of it as a fashion statement.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/24/2008 6:05 PM (GMT -6)   
Hi Kathy,
I hope everything goes well on Friday for you. I also have the heavy leg feeling. Its mainly in my left leg also. Wow, D'awesome hit it when she said walking is a concious effort anymore. How true is that. I have to think about every step i take too. I have the numbness pretty much all the time, in both feet. Its very annoying. You should take a cane w/ you. I use one all the time now. You can grab one at alot of pharmacy's, DME store, etc. My local CVS carries them. I have several. Like Barb said, i think of it as a fashion statement too. I try to pick the one that matches my outfit best, lol. Sounds silly, but hey, if you have to use one, why not. My daughter was kind of embarrassed at first, but she understands that i need to be safe. They get used to it, believe me. Have a great time on the field trip. Just try to stay cool, and rest when you need to.
Take care
Lynn
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 4/24/2008 6:28 PM (GMT -6)   
I too have the heavy leg syndrome...the day after avonex injection can add to it also..Ask your nurse about it..If you are not steady with the cane rollater walkers with a seat are the best you can walk plus you can sit if you get tired......Plus they dont look as bad as the old silver walkers...Hope everything works out for you!!!barb


diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/24/2008 8:23 PM (GMT -6)   
It's really funny...most of my weakness is in my left leg too! Off and on the fatigue has been bad, but I haven't taken any meds for it specifically. I've heard of the Provigil before...what are the side effects? I took Neurontin for my nerve pain, but noticed I had more fatigue with it, so I eventually weaned myself off of it when my symptoms let up some. I'll definitely look into getting a cane. Maybe I should take my 4 year old little girl with me when I pick it out...she loves to dress up and "accessorize"! Anyways, I ended up not going on the field trip today and I felt just terrible about it. I hate letting my kids down. I just knew I wasn't going to be able to keep up with everyone today plus my two little girls. I did take the girls to the park instead since we didn't get to go to the zoo. Not as much walking there. I am not looking forward to my first shot tomorrow. I pray my husband pays close attention and is very very gentle! I will definitely let everyone know how it goes. Thanks to everyone for all the support. Talk to you later...

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 4/25/2008 5:30 AM (GMT -6)   
Friday a.m.
 
Dear Kathy:
 
Sorry you are having these "problems".
 
But...if I may interject....
 
I have been dx'ed for 20 years.  And for the first 15 years of my MS life, no one could  tell I was a MS patient.  But....things started to change @ 5 years ago.
 
Bought my first cane.  Helpful.   Then had to go to walker.  Then a wheeled walker.
 
And each progression of new equipment, I would kinda  sigh...but...
 
You are going to the zoo with a youngster?  She will be SO excitedm to be there...she'll be RUNNING from animal to animal..wanting to make sure you saw this animal....
 
The apprehensions you are having are self imposed.
 
What would be more important to your little girl?
 
To have you there with walking aids or not.  Of course.
 
I  just took delivery of my electric wheelchair a month ago.  A whole new world.  The risk of me falling?  Gone.  The EMS guys I had to call to put me back on my feet knew me  by first name.

Have you had a talk about your condition with your daughter?  Does not sound like it.  You know, I think MS society has brocures about talking to your children about your (our) disease.

Taking a walker to the Zoo?  I am tired just thinking about it.

You know, it is a whole new world in that respect.  Don't you see electric carts available for use in big supermarkets?  Maybe call zoo to what they might have, help.  I'll bet you would be surprised.

NOW GO ENJOY THE ZOO!!!  What is your daughters favorie animal?

I might have given you more that you asked for here...but we were all pooped on by this MS thing.  We deserve any aid we can get.

Right everyone?  Happy in his electric wheelchair, John

 

 

 

 

 

 


 

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/25/2008 6:08 AM (GMT -6)   

Thanks John, I know the post was for Kathy but I'm also in the adjusting stage to realizing when a cane maybe necessary and how to accept a wheelchair at the theme parks... I'm only recently (FINALLY) dx'd but it's been coming on a long time... the whole unsteady on my feet probably drives me the craziest.

Alot of good encouragement here, from everyone,thanks!


Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/26/2008 9:26 PM (GMT -6)   
Sorry John, I must have sounded pitiful. I guess that I am just trying to adjust to alot at once even though I have had the "probable MS" dx for awhile. My mom was just found to have colon cancer, had surgery, and started chemo all in the last couple of months. She's staying with us also during the first few days after each tx. Between that and my recent attack and final dx, and other medical stuff in our extended family, my poor kids have had to deal with alot. I'm sorry...I ended up not going to the zoo. If I could have gone more at my own pace and not kept up with her class, it would have been better. We had just gone to the zoo with the kids during Spring Break so that made feel a little better about not going. I tried to make it up to them and took them to a big park with my mom and sister instead. That way I had my sister's help and I didn't have to do all the walking. I promise to try harder next time.:) I'm glad you are enjoying your electric wheelchair. And oh by the way, my girls love the elephants! Thanks for the push in the right direction.
Diagnosed with MS March 2008
Avonex         

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