Greetings/Leg Issues

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GretHerb
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 1/7/2008 7:43 PM (GMT -6)   
Hello, all. My husband was diagnosed with MS about 5 years ago at the age of 27. He has R and R MS. He is on Betaseron. I would have to say he is doing very well. Additionally, his symptoms are similar to many I find on here. Besides the fatigue and sensitivity to heat, he has leg cramping in the evening, once he gets comfortable in bed. And, after he falls asleep, his leg twitches. Of course, it doesn't bother him, but it does disturb my sleep sometimes :-) !
 
This morning, he woke up to his left leg feeling markedly weak, so now we're monitoring that. For his legs, he is taking tinzanadine (sp?) and let me tell you, it ain't workin'. It was nice to read about the baclofen, and he's going to mention that to his neuro. at his next appt.
 
I recently read there *may* be a link between MS and mononucleosis. Interestingly enough, Herb had mono when he was a teenager. So, we're curious...did anyone else on the board have mono as a kid/young adult?
 
Anyway, nice to find this board and look forward to sharing information!
 
Gretchen and Herb
 
_____________________________________
Diagnosed in 2002
Betaseron (every other day, subq)
Remeron and Effexor (to conteract the depressive effects of Betaseron)
Tinzanadine (hoping to switch to something more effective)
Uroxatrol (bladder issues)
 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/7/2008 8:37 PM (GMT -6)   
I did. I think lots of folks did..some who have MS, many who don't. There are lots of ongoing studies trying to link various diseases with MS...and so far, none of them have proven "right".

I hope your husband continues to do well! I've been on Betaseron for 15 years now, and am relatively stable....
...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 1/7/2008 8:53 PM (GMT -6)   

Hey Gretchen!!!!

I love your name I think it the most beautiful name I have ever seen!!!  Welcome to the board.  I am sorry your husband is keeping you up and night.  That is no fun for sure.  Sleep is so so important.  Do mention it to Herb's doctor.  And monitor that leg weakness. 

I did not have mono ever.  I have been really really healthy up until I started with the MS symptoms and diagnosis. 

Again, welcome to the board. 

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


GretHerb
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 1/8/2008 9:09 AM (GMT -6)   
I agree. Gretchen is a lovely name! :)

Herb was hoping he would wake up today and his left leg would feel normal, but alas, it still has marked weakness. Bummer. So, we're going to just monitor the situation, and if it continues, ask Dr. Cohen about some PT.

We find it very encouraging to hear about the success of various medications for MS! Anyway, our thoughts and prayers are with everyone here!!!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/8/2008 10:44 AM (GMT -6)   
Hey Gretchen!

I too love u'r name...but i'm a bit biased. My best friend's name is Gretchen as well. The leg weakness can be very frustrating to live with. I do hope something can be done to help him with it. I'm not dx'd nor am i sure my symptoms are due to ms, but i do have lots of leg probs. Mine are either both legs or one at a time..and that weakness and 'jello' feeling is just torture. I feel for Herb and pray for his wellbeing in this. Please do mention the PT and other meds at u'r next appt and let us know how that goes. For mine, i use a few meds. My legs jerk and twitch as well. Mostly when i come to rest and have gotten really relaxed...as in sleeping. My doc gives me Requip for RLS and it helps a lot! I still have some twitching and pain, but it's much improved! I also use Neurontin for nerve pain and that helps a lot as well. Please take good care of u'rselves and ask as many questions here as u'd like. We're all here to support each other and we're so glad u'r here with us!


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?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/8/2008 5:31 PM (GMT -6)   

 

That's funny!!!! My best friend's name is Rhonda!!!!  Weird!


Gretchen       co-moderator MS board       diagnosed with MS July 2006


asposeep
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/9/2008 3:58 PM (GMT -6)   
Gretchen-

My name is Ashley and I am 26 and was diagnosed with MS at the age of 18. I was doing great until this past year when I had the same leg weakness and was starting to get pretty scared. It got to the point that I was tripping over my left foot when I would walk. I spoke to another lady with MS and she told me that she was seeing a chiropractor and that the results for her were great...no more weakness and no more pain in her legs. I have begun seeing a chiropractor as well and must say it has helped immensley. I still have leg weakness sometimes, mostly when I haven't been to see him in awhile or I have been sick etc. But I am so happy with the results and would reccomend the chiropractor to anyone. He massages out some of the scar tissue on my weak leg, does some accupuncture, as well as getting my bones aligned. I see him twice a week and love it!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/9/2008 7:39 PM (GMT -6)   
What "scar tissue" on your weak leg?? The "scars", or "sclerosis" of MS show up in the BRAIN or on the spinal chord...not on your leg?? I'm sorry your bones are "out of alignment". Were you in some sort of accident?

I hope you've told your neuro about your chiropractic visits.
...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 1/9/2008 10:08 PM (GMT -6)   

I have three spinal lesions.  One is quite big and the other two are pretty small.  I would be so so so afraid that any sort of "manipulation" of that area would cause I flare.  As it is, if I sit in this one chair that has a hard lumpy back ( it is one of those really cool looking chairs that is made from rough wood branches ) my leg tingles from the pressure.  I asked my doc about that and she said your spine is a bit fragile where you have lesions.  Her recommendation is to be careful with any sort of pressure or twisting.  That being said, for me chiropractics is a definite no. 

That is just my two cents.

Love and prayers,

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/10/2008 1:34 PM (GMT -6)   

Hi there everyone....question about the electric shock sensation that I get when I bend my head forward.  I noted in one of the last posts here, that the ergonomics of a chair can bring on symptoms.  I never actually thought of that till now, and with that here is the question...

The electic shock sensation from bending my head forward is more so when I am "slouching" then if I am standing straight.  Soemtimes when I stand tall - I wll not get a shock feeling at all - but that is just sometimes.  But at any time if I do that when I am not standing straight ....I get the senasation.

So I learned from this that posture, is ever so important, more so now then before....Does this make sense??

Gary


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/10/2008 10:25 PM (GMT -6)   

Hey Gary,

That sounds about right.  My lehrmittes comes and goes.  But when I am having it, I can definitely make it more pronounced when I slouch or sit all slumped down in the couch cushions  (I love doing that).  So it seems we can apply more pressure to the lesions when we don't sit or stand straight.  It makes sense really.  If we have that good posture that you speak of, then it just seems that we are not leaning on those lesions with vertebrae.  Well, I really don't know that that is what is happening but that would be my guess.

This would be a fascinating disease if it were not for that fact that those lesions are mine lol.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/11/2008 9:47 AM (GMT -6)   

Hi there, thanks - I was just wanting to make sure - just checking all possible avenues - and maybe grasping for straws, thinking that it was a pinched nerve or something - but now that I read your post, it makes sense that it is pressure on the lesion when not standing straight.

I know if I "lounge" on the couch for too long, the symptoms seem to come back, or get worst - ie tingling fingers and that darn electirc shock thing that happens.

Guess it is time for a Lazy Boy chair - Ive wanted one for a long time now, mmmmmmmm - my birthday is coming up, guess I better get my wish list in soon....

Now if I might ask another question please - fatigue....

Yestereday I went from when I got up to go to work until I went to bed last night without having a nap...I wanted too, but it just never happened. (New TV last night - hooking it up - you know - boys and their toys!!!!)  Come last night, the electic shock thing was really bugging me, my hands were really tingly, and I got a bit of that Head Fog thing going on that I have not had for quite awhile.  I contribute that to the fact that I have been taking regular naps, and thus giving the old brain a chance to recharge. But it did happen again last night.

So with the lack of napping, will this bring on the symptoms like this. I think I have heard that it does, but just would like a reconfirmation. Even when I went to bed last night, I think I was so over-tired it took me awhile to go to sleep. But I think the fact that I was experiencing some inner trembling (that I have not had either for awhile) was keeping me awake...

So fatigue and not taking care of it - will that bring it all on...

And if I could ask just one more (I promise no more) - has anyone experienced low blood sugars as a result of all of this????

Thanks so much

Gary


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/11/2008 7:48 PM (GMT -6)   

Hey Gary,

I only have minor fatigue so I am not a good one to answer your question.  I will just tell you my experience.  When I am tired, any or all of my residual symptoms can get worse until I rest.

As for the low blood sugar, I don't think that is a usual MS problem.  It can be a problem if you are on solumedrol ( high dose IV steroids ) .  I had some blood sugar problems related to the steriods but they all went a way after just a few days once I was finished with the steriods. 

I am sure others will be along to speak of their experiences.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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