Describing Symptoms - spasticity - ON - weakness, headaches?

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StacieC
New Member


Date Joined Mar 2007
Total Posts : 10
   Posted 5/19/2007 8:24 PM (GMT -6)   
Hello everyone,
 
I hope you are all having a great weekend.  I've been kind of just relaxing for the last day or two, have a 4 day (12 hours each) stretch of work, then I'm off for over 2 weeks - really looking forward to it.  My MRI is Monday morning, then I go back to see the Dr. I think on Thursday.
 
As I've relaxed this weekend, I've really been trying to concentrate on what's going on with me.  I talk to the Dr. and I have a hard time describing my symptoms - I get anxious and just can't seem to express myself correctly.
 
This weekend, I've had multiple cramps in my legs, and when I wake up, I'm so stiff and tight I feel like I can't walk.  Then, this evening (and I've noticed before, but forget mention) my leg muscles on the right side just seem to keep tightening and relaxing - even making my toes curl - my husband could feel it - he was rubbing my feet :).  I wonder - is that what is referred to as spasticity?
 
Also - eye pain - is this Optic Neuritis?  I hurt in my left eye more than my right, but they are both achey a lot.  I have had very brief bouts of blurriness in my left eye, but it doesn't last for any length of time - a few minutes at a time, then passing, but coming back frequently - just not constant. 
 
As far as weakness goes - it comes and goes.  I have a 4 year old that I can't for the life of me pick up, but my 12 year old daughter picks him up with no problem.  I was trying to carry a 6-pack of 24 ounce colas into the house, and felt like I couldn't lift them.  Since I'm left handed, it's always the left arm I notice this in - but I very rarely even attempt to go with my right.
 
And finally - headaches.  I have them constantly - every day, and have come to accept that I'm going to be a lifelong sufferer of tension headaches.  I also get migranes, frequently.  But lately (I posted about this before, sorry if it's a repeat, don't remember exactly) I am getting a headache centered kind of to the left side (or at times just the right side) of my head, kind of at an angle, from my forehead to my ear, and down into my eye.  This is unlike any headaches I've ever had in my life.  Usually my eye pain (that I mentioned above) is present when this happens.  The last time I had a headache like this, it stayed for 3 weeks and 5 days, day and night - I would wake up feeling it, I would go to sleep feeling it, it kept me from sleeping - it was constant, and it was awful.  At that time, they CT'd my head and found it to be negative.  Now, it's back, only not quiet as intensive - it's been about 3 days so far - but there are times that it actually feels like it lets go.  Then, it comes back again.  I tried to describe this to my Dr. and she kept wanting to insist it was tension headaches and referring to them as band like - but they aren't it's not all the way around my head, just at an angle on either side.  Does anyone feel these - is there a better way to describe them? 
 
I'm sorry - I don't mean to sound whiney - I think I'm just frustrated.  I've been chasing answers for awhile now, and it's really just come down to it almost has to be neuro in nature.  I'm afraid the MRI will show something, and then, in some ways, I'm afraid it won't - because I"m so tired of feeling bad and not knowing what's wrong.  I really feel like my regular Dr. isn't listening, and I'm not sure yet if I trust the Neurologist.  I feel awful tonight - and have for about a week - I don't know if this is considered a relapse or what because I don't know what's wrong with me yet.  With the symptoms coming and going like they do, could it be MS or are we on the wrong path entirely?  We've ruled out some things, and other things that have been suggested really just don't seem to fit the symptoms.  I think I'm out of patience, and energy, and I'm ready to move on.
 
Suggestions?
 
Stacie

Dondi31
New Member


Date Joined May 2007
Total Posts : 3
   Posted 5/19/2007 11:38 PM (GMT -6)   

The eye thing could be related to MS--I have frequent problems with my eyes in relationship to MS---I suggest finging a good nuro-opthmologist--I however also have another auto-immune illiness called orbital inflammatory disorder.  This is not common, most people do not know what it is--sometimes it is called orbital psudo tumor.  Your headachs could stem from a problem with your optic nerve.  I always have a headache that goes along with eye problems in relationship to these two illnesses.  It is not a normal headach but more along the lines you are describing.

The toe thing happends to me and I believe it is what is called spasticity.  Wait until you get it in your whole leg-upper thigh--that is a fun time!!  Hopefully this will illude you!

The lack of being able to express yourself is very common in people with MS, however also common amoung busy moms, overworked dads, and basically the general population. Do not be alarmed, just try to take it slow.

If you do have MS, more likely than not the MRI will end all doubts.  It is possible to have MS and not show any leasions on your MRI.  Hopefully, these things are just flukes, but if you have MS is it not the end of your life, just a begining of a new altered one.  I have known I have had MS for almost seven years, but symptoms show I would be closer to 15.  Bottom line is that it gives me problems, but a positive attitude always eases them along.

By the way way, it there a spell check on this message board--I can not spell and I have yet to see a spell check--Sorry for all of the people reading this who are spelling wizes---One thing I wish I paid more attention to in school.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/20/2007 6:33 AM (GMT -6)   

The aching and constricting muscles you describe is "spasticity". Or cramping. Either word should be familiar to your doctor.

The eye pain you have -- the angle into just one eye thing -- might be a "cluster headache", which is a form of migraine.  It only occurs in one eye, is a stabbing pain.  My husband suffers from those. His don't last for days, though..but for hours, unless he takes some medication just as he notices it starting. Then it'll only last for an hour or so. But they can be VERY painful.

Whatever is causing your headaches..migraine, "tension", whatever -- should be taken more seriously than just being dismissed as "tension headaches". I'd probably be looking for a new primary doctor who is more concerned.  Certainly tell your neuro about the headaches, and that you've had migraines in the past. There might be some link there.

Optic neuritis is easily seen by your neuro if he exams your eyes, and by an opthamologist (they'll have similar instruments.) The optic nerve should be pale (paler than the nerve in the other eye) and sometimes swollen in appearance.  While it can cause some of the symptoms you describe, there could be other things going on there, too, so I'd probably not say to the doctor "I have optic neuritis", but instead describe the symptoms.

The neuro should be easily able to detect any weakness in your arms and legs, and determine whether one arm or leg is stronger than the other, for example, right there in his office. Those would be part of the tests he'd conduct to determine any clinical signs that might point to a diagnosis.

 


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


StacieC
New Member


Date Joined Mar 2007
Total Posts : 10
   Posted 5/20/2007 9:05 AM (GMT -6)   
Thanks guys,
 
Feeling a little better this am, of course, I slept until 10, and have to go back to bed because I work tonight - that's alright - I can sleep whenever, wherever - I love sleep, it's my favorite. :)
 
To Uppity - thanks for the info - I wasn't planning on calling it ON to the Dr., that was for me, wondering if that's what it could be.  On the note of the weakness thing - during the neuro exam - she had me hold my legs up, one at a time, and would push on them.  The right one yeilded more, and she made another one of her hmmm comments, but didn't say anything more.  I wondered at the time was it abnormal, but the more I think about it, I bet it was.
 
The headaches have been part of my life since I was young - I don't even remember when they started, but I'd guess somewhere pre-teen. I've had eye exams (of course - I wear super strong glasses) and the Dr.'s never make comment - but the neuro did focus a long time on my eyes and my husband said she was frowning the whole time. 
 
Basically, I think my primary Doc just doesn't know - he put me on Topamax that helped bunches, but it was making my memory worse, and when I got hit with the numbness to the right side of my face to the point where I had literally chewed two holes in my lips, I took myself off of it, because numbness is a side effect.  As it turns out, it wasn't the topamax, because it happened again the other day and I've been off it for a few weeks now.  I have the prescription filled, just keep forgetting to pick it up.
 
Dondi, thanks for the info on the eye stuff.  And on the legs - it actually was part of what happened yesterday.  The muscles from my thigh to my ankle just jumped and bounced, all night long actually.  My toes jumped and hopped and would curl under - it felt like electric currents were being pumped through me - but it stayed on the right side - did wake this am with a charlie horse in my left calf though.
 
Oh well - anyway - I wanted to say thank you again.  I think I was feeling helpless and a little worn down last night - this morning, it doesn't seem so bad again. And yes, hopefully the MRI will answer all questions.  I just worry, if the mri shows nothing - what next?  It's been almost 2 years with various wierd things going on - not just neuro related - nausea, vomiting, diarrhea, and then the neuro stuff, headaches, vision disturbances, poor balance (can't walk across the house without trying to fall over at least twice), memory loss, confusion, extreme mood swings, tiredness and lets not forget the constant pain in my neck, my shoulders, and frequently my legs.  Two years, and I finally got referred to a neurologist - so if the MRI is negative, then who do I go to?  I know this brilliant rheumatologist - I wonder if he could solve it? (laughing)
 
See you all later.
 
Stacie

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/20/2007 1:29 PM (GMT -6)   
Actually -- if the neuro comes back with all "negative" results (meaning, they can't find anything..yet..on a neuro exam), then a rheumatologist is a good next step!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Pisco
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/1/2007 10:18 PM (GMT -6)   
Do you by any chance find your palms curling up towards the insides of your arms?

Thankyou so very much for your post. I also have such a difficult time describing this pain as I seem to have different types of pain.

I have no idea what this is caused by, but I feel like its destroying my life and I am starting to feel hopeless.

My bloodwork didn't seem to tell the doctors anything much and this was very discouraging.

The only neurologist seemed to not give me the time of day - but I wasn't having the problems when I saw him and have a hard time describing it when it isn't going on.

I've started drawing diagrams when I can use my hands. This way I won't feel so overwhelmed when I am trying to describe it.

-P

HeideBee
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/11/2007 10:41 AM (GMT -6)   
I went into my doctor with literally a list in my hand. It gets so overwhelming sometimes that I "forget" to mention everything to her.
I worked on my list over a period of 2 weeks while I waited for my appointment, and even asked other people what some of the things are that I may have missed on my list.
Taking a list to the doctors office of symptoms possibly related to the reason for the appointment is on the list of top 10 things doctors want you to do, but don't tell you. Along with taking a shower, and not trying to have the rest of your family treated at your appointment.
Trying to describe pain is one of the hardest things in the world, doctors know this too. Pain feels different to everyone. I've had a c-section, and a hysterectomy, they rank about a 7 on my 1-10 scale of pain. The pain I feel daily in my legs is kind of like what it looks like when you take an axe and split wood, or as though the flesh is being peeled off the bones. Describe the pain the best you can. Don't worry about getting things "right", the doc will help you figure it out!

Thomasan
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/9/2009 6:32 PM (GMT -6)   
I have been experiencing more spasticity and take Baclofen to control falling and give me more balance. I am taking 50 MG daily for two weeks. I exercise on my treadmill 30 minutes a day and stretch reguarly. The dosage has been increased from 35 MG daily gradually. My neurlogist said the low dosage was why I wasn't getting the full benefit of the Baclofen. Can anyone tell me why my condition is getting worse with the higher dosage?

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/10/2009 5:56 PM (GMT -6)   
Pisco,

I have one hand that tends to curl up ( tbe hand & the fingers) and I have found that exercising that arm and hand really helps. I have a cross trainer and I focus on pulling on the handle with the weak side. Also if I soak the hand in hot water (wash the dishes) seems to really help and then I can type easily again.

I do suffer from spasticity so I guess it is from that.

Thomasan,

I have baclofen in a pump because I was experiencing such intense pain, muscle spasms and spasticity (mainly of the left side and spine) & was allergic to oral baclofen. The advantage to the pump is that you can have a much lower dose (the drs say I am getting 1/300 th of the oral dose I would require). It is fantastic because I have no pain but the spasticity/weakness relationship is complicated. For me the higher the dose of baclofen the less the spasticity BUT there is MORE weakness because that seems to be the way baclofen works. The baclofen makes me feel shaky & weak which affects the balance. So what I do is have the lowest dose during the day (so I am more stiff but less shaky), then from 8.00pm I get a higher dose because that is when my pain/spasticity is worst. If I stand on my stronger right leg I dont shake but when I stand on my weaker left leg I shake a lot.

Ask if there is anything that I can help clarify.
Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 8/10/2009 6:52 PM (GMT -6)   
"I've been chasing answers for awhile now, and it's really just come down to it almost has to be neuro in nature. I'm afraid the MRI will show something, and then, in some ways, I'm afraid it won't - because I"m so tired of feeling bad and not knowing what's wrong"

Amen! I hear that loud and clear. I feel exactly the same and I too have a 4 year old I can barely pick up. I've been to so many specialists in the past few months and I am so tired of being sick and sick of being tired. The only positive tests have been ANA. Everything else is negative thus far. I just met with my PCP again today and she is sending me off to be tested for Lyme disease and to get an MRI. She mentioned MS as a possibility. I am anxious that neither will provide any answers. I just want my life back. I know exactly how you feel. shakehead

Thomasan
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/12/2009 9:09 PM (GMT -6)   
Thanks Pisco for your help. Now I have some options. I am going to OHSU when I start medicare and blue cross supplental insurance sometime in September. They have a movement disorder therpy clinic to reduce the spastity. I will ask them about the pump. My neurologist took three MRI's and never got an answer as to what is wrong with me. All tests came out negative. I'm very optimistic but patience is the tough part.
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