Has anyone experienced this?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 9:15 AM (GMT -6)   
In the beginning on and parathesis were my symptoms. I just had a bout of spasticity for the first time. I had experienced small isolated things prior to this.
 
It began with muscle cramps in my right leg making me jump out of bed. After about 3 days of this I developed a more defined or (extra) visible muscle on that leg.
 
Not the most horrible thing, but the next few days things changed greatly. I was watching tv one night when my legs from the knees down began to cramp and draw by the shins. My feet turned inward facing each other and it was a bit painful, but more scary than severe.
 
The next morning I awoke to excrutiating pain in my back, and not able to bend forward. Not even to sit on the toilet to (pee). I took a bacoflen to see if there was anyway this was a muscle thing and true to form i could finally ease forward. The pain was immediately gone and it really taught me how much a muscle in that area could hurt as much as the bone itself.
 
Then that day I spent with fatigue, legs cramping and this is the part I'm concerened about: with every muscle aching. Each one. Even my neck muscles in front of my throat hurt. By the next morning several muscles that hadn't cramped were sore like they were bruised. When I went to look at them , they were fine looking. Still feel like they are bruised. I understand I am in episode w/spasticity, however is it common to have that many muscles become involved? Even the ones in my stomach were much like false labor contractions.  I felt suddenly like I was neuromuscular and would of doubted MS except for the heat sensitivity and the On.
 
Is this normal or rather I mean is this some of the abnormal ways spasticity can do to you? Anyone else had this happen to this many muscle groups?
 
The ones that felt bruised were on forearm and underneath my arm before you get down to the elbow.
 
 
thanks
Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/18/2007 10:44 AM (GMT -6)   
I'm sorry you're having such severe problems with spasticity. Yes, it sounds like that is what it could be. You do need to talk with your doctor to see if you need to be taking some meds for it. It sometimes takes awhile to work out the best dose for you, to relieve your symptoms, so don't hesitate to keep in touch with the doctor to work out what works best for you.

Spasticity can affect any muscle group, including internal muscles, like the esophagus, or diaphram (sp?), or bowels (that's what can cause bowel incontinence, for example), bladder (that's in part what causes bladder incontinence), and so on.

So I guess I'd not call it "abnormal"...just a lot at once, which again you really need to talk with your doctor about. It could be a sign of an exacerbation coming on (which generally is defined as an increase of intensity of symptoms, or new symptoms not experienced before, lasting for at least 24 hours... not that each spasm has to last 24 hours!!, but the overall spasticity continuing.)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 2:14 PM (GMT -6)   
Thank you, and yes it is continuing with an increase of symptoms not incurred before. Some of the fatigue and heat sensitivity are present as well as a dull ache behind the eye that has the paleness. This time the other eye has the dull ache.

We had agreed not to intervene unless the eyes were involved as far as steroids. The last time I saw him I asked him how much neurontin I should be taking as the larger hospital I went to for dignosis said that I was only on an 1/8 of the amount of meds that I could/should be on. He replied with No, you'll be admitted. The problem with this, is that I had also told him they had warned agains't the overuse of steroids unless the eyes became involved (may sound contradictary). The eyes are not what I would call full fleged, meaning they are not blurry.

I will contact him though to find out about an increase or proper dose. I was warned Id feel loopy on 1/2 of a 10mg bacoflen and to slowly decrease it. It took a whole one from the beginning to ease any of it.

Question for you? You mention the diaphram. I am finding trouble breathing as far as feeling as if Im having to take "voluntary" breaths. It really is tiresome and my chest hurts at the end of the day. It's possible that this is from my mind only I suppose. I will say that it's still Scary to me. Does spasticity hurt the diaphram to the degree of me not being able to breathe? Or is it more cramps that occur in this area it's usual presentation.Im r & r Ms.

I became used to going through the exacerbations at home and fail to recognize at times when it's a more severe one as symptoms with MS can be so intermittent through each day. So different from day to day. This has been going on for about 5 days and its never happened before. So I do see this as an exac.


Thanks for responding,

Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/18/2007 2:31 PM (GMT -6)   
I'm wondering if your breathing issue is really what is commonly called the "MS hug"?  There are muscles that go around your torso (and around your arms, head, and legs).  If they get affected by spasticity...and sometimes it can be a matter of a sensory issue and not spasticity...
 
it'll feel like you are being "squeezed in" -- thus the "MS hug". I liken it to your lovely elderly Aunt Sadie who comes to visit and insists on giving you a BIG hug, smothering you in her...uh...chest.
 
Folks have been known to rush to the emergency room thinking they're having a heart attack, or collapsed lung or something..to find that everything checks out "negative"...no heart attack, the lungs are functioning just fine, the diaphram is doing what it's supposed to do ... just the sensation of being squeezed, and that you're "not getting enough air".
 
With all the other spasticity occurring right now for you, I'd bet that it is the spasticity of those muscles. Sometimes this is called "banding". 
 
Do call your doctor and at least report this occurrence. Even if he doesn't want to treat it (or you don't want to do steroids) it should be noted in your records that you're experiencing an exacerbation. I hope you feel better soon.
 
You can take more baclofen than you're currently taking too -- but again, don't increase (or for that matter, decrease!) the dose of baclofen or any other med without talking with your doctor!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 3:28 PM (GMT -6)   
You were right. I did call and report this after reading your post. The doctor will call me back and she (his nurse)  is pulling the chart to note that I'm in exacerbation w/spasticity. I'm actually relieved at your post as that is how I had begun to describe it. I'd said, "I'll end up going in for a heart attack" haha. Your right, with all the other spastcity it makes sense. It's one thing to read it but another to have felt it and then recognize it as such.


I appreciate you taking the time to answer this as I feel much much less afraid.


thanks
Kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 12/19/2007 8:53:47 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 12/18/2007 5:18 PM (GMT -6)   

Keira,

You have been a busy girl today! tongue   Welcome to the board.  I am sorry that you are having such a rough time right now.  That all sounds pretty miserable.  I have had the toeing in problem before due to spasticity.  I have had botox as a localized treatment and I have taken baclofen.  You have a great perspective on your life ( I loved what you said on the "evolution" thread). 

Again, welcome to the board.  You have a lot to offer so please feel free to post often. 

Love and prayers,

 


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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 7:28 PM (GMT -6)   
it's nice to meet you Gretchen. I did see your post about your toes. Sorry to hear about it , Ive had some spreading of them and quite frankly its freaky looking.

How did you feel about the Botox? I've had it in my forhead for vanity reasons. I should've known that I'd need it later for playing with vanity uh? nah....jk.
I've read that it's pretty effective and they are trying to use it earlier in hopes of delaying some damage spasticity does to our stiff walking. Did you think it worked well?


Thanks about the evolution thread. I have my moments that I am frightened. Especially if they are new symptoms that I cannot at least identify. Once I know what they are I then know how I'll manage them and move onward.

I think keeping humor in your life is very important also. Uppity's example of Aunt Sadie cracked me up :grin:

Seems like a nice board with alot of good information. I'm glad to see that someone is using the botox as you can let others know if you feltl it effective or not. So much better when everyone can add ideas for managing what we deal with.


Thanks for the welcome.


Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 12/19/2007 7:32 AM (GMT -6)   

Hey Kiera,

I had the botox about ten weeks after a really bad flare.  It went really well.  They located the spot to inject pretty quickly and injected and it took about an hour before you could reallly see a difference.  The doctor thought I would need it again in three to six months but it has been six months and I don't think I am going to need it again.  The toeing in was definitely from the flare and I have cooled/healed sufficiently that I don't think I am going to need it again.  I would do it again if I needed it.

Love and prayers,

 


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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/19/2007 9:19 AM (GMT -6)   
I do plan on speaking to my neuro about his feelings of botox. The reason is I wish to make sure that he is aggressive about his methods. They are (ive read) trying to handle it more agressively much earlier as I stated. They feel this may delay walking disability.

My neuro is learning as he goes and largely from me. The top hospital I went to taught me quite a bit which allowed me to update him about what they are doing now. He was very very open to all of it.

Have you ever had a toothache feeling in your leg from thigh down? I have a knee that has osteoarthritis in it, i'm not sure if that is causing it or a duel with spasticity and the bad knee. It's exactly like a huge toothache. Wasn't sure last night whether to take neurontin, or baclofen. I ended up waiting and it did leave thankfully. So it would of been a false idea had I taken one of the two meds. I would've thought they were the reason it stopped.

May I ask what medicines you are on daily? I'd just like to make sure that I'm aware of all that is offered for our condition.

I'm on 3x neurontin per day , 300mg ( I do not take this unless in attack). I see no reason and do not wish to develop a tolerance. It has no benefit when not symptomatic. I just began the 10mg baclofen x 3 per day. Copaxone sub q as you are also. Folic acid and B12 shots monthly. I was anemic for quite some time. Eye drops for genetic eye condition that flares when Ms does. Optho thinks that its due to corneas being very sensitive to nerve endings.

That is about all the meds other than ones i have prn for ibs, hiatial hernia, and im to take motrin when chostrachondritis kicks in. (cartlige where ribs meet in center of chest swells).


My last ekg was abnormal with a normal echo. They admitted me saying it was cardiac but released me the next day with belief that chostrachondritis was why i had chest pain. Ekgs have been changing but they explained this can happen due to chronic disease.

I insisted (they are not easily gotten) a pet scan as I was fearful of cancer. I had began having bone pain on top of all of this other. Now I have osteo that had not been symptomatic until the past 6 months. It basically put my fears at rest concerning cancer and with MS the pet scan shows metabolic changes consitent (sp) with chronic disease. When the cardiologist asked how I talked them into the Pet, I explained to him that when a person feels something moving through their body , most will wonder about cancer at some point. He agreed and thought it was wise to have that ruled out.
Seeing as how since we have MS that is no guarantee of immuntiy to anything else.

They explained to me that my ekg's change because of MS. It doesn't mean that they are abnormal but rather when compared to others they continue to change.


I will approach my doctor concerning botox. Since this was in so many muscles, I would have to pick the greatest one of hinderance or pain.

My voice is becoming hoarse and I speak lower (was told this was due to talking : tired ie, ms fatigue).
All of this had made me wish to begin classes. If I do not make it for Jan then I will begin in June. Id like to study neurology. I'll begin as if taking course to be a nurse and add other subjects that will align me for later degree.
It will be nice to do it online so I dont have to worry about the episodes bothering that.

I wish you a lovely day and several symptoms less than ever before!

thanks
Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 12/19/2007 5:39 PM (GMT -6)   

Hey Kiera,

I am on copaxone, baclofen as needed and klonpin as needed.  Both of the later drugs are for treating spasticity which is not an everyday occurance for me.  I take a some supplements too (vit. D, coq10, niacin, DMG, magnesium). 

Your toothache pain in your leg really sounds like the osteo arthritis.  I would ask your doctor.  I have never had that sort of pain.

love and prayers,

 


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


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/19/2007 10:42 PM (GMT -6)   
Good idea. I need that knee fixed to prevent falls anyway. So i think the muslces were kind of helping it along as well.


I take the D, zinc, mag, b6 and drink all green things...YUM? ugh.


I'll call Rheumy tomorrow.

thanks
kiera

P.S. mine's not everyday, this is the first for me with spasticity. it's every day for this episode.
Every day brings us closer to what we reach for .........in all things.
 
Kiera


hms1
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/19/2007 10:50 PM (GMT -6)   
I have almost, close but not completely, the same symptoms as you. I especially took note of your stating: "Even the ones in my stomach were much like false labor contractions." I get the same exact contractions when I'm in bed.

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/19/2007 11:07 PM (GMT -6)   
Yes, a very odd feeling. No pain but you sure know where the muscle groups are! huh?...

I suppose we all will share in a little of everyone's symptoms to some degree. They say no two are alike. Some however, are close.

Thank you for letting me know that you've felt those too. Not that i wish that on anyone but I dont feel as alone.


Things will get better!

thanks and g'night
Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 25, 2017 5:53 AM (GMT -6)
There are a total of 2,872,916 posts in 315,279 threads.
View Active Threads


Who's Online
This forum has 156779 registered members. Please welcome our newest member, TnCindy69.
338 Guest(s), 12 Registered Member(s) are currently online.  Details
Michelejc, WILSONJON, tickbite666, Bucko, sdfh, Loutucky, BillyBob@388, TnCindy69, MarjieKay, SharonZ, testuser1234, Szabo246


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer