Myclonus

[cuzpach]

Hello all, just got back from a visit to a neurologist with my wife.  She has been having muscle spasms and jerks particularly in the shoulder area, kind of look like she shrugging.  Doc colle it myclonus.  Her aunt past away a few years back from MS releated problems, so naturelly we worry about MS.  About a year and half ago (9/2011) she had numbness and tingling in her hand, but the MRI came back clean.  The doc has ordered a round of tests including a mri, my question would be, has anyone's MS presented with myclonus jerks as a  first symptom?  Is this common?

Thanks.

[Lulu54]

Worry is natural, especially when living with this uknown.  The spinal MRI is a good next step - I'm glad to hear it sounds like she has a great doctor.

Here's hope the next round of MRIs yield answers.
best, Laura

[cuzpach]

Update.

Well we had our nuero appointment after MRI and eeg test.  Eeg was slightly abnormal and he wants my wife to wear a eeg monitor for three days to see if the myclonus are actually seizures.  (She is going to look so cool)

MRI of spine and head were normal and compared them to the mri from a year and a half ago and said it all looked good, so we ruled out MS for about five minutes.  Then we asked him about the previous appointments hyper active reflexes and he checked again.  Both knees were hyper active.  He said that now we need a MRI of the lower back or thoracic (sp?) area.  Sigh, so still worried, he said there was no weakness but was concerned about a lesion or tumor so we could not rule out MS, he did say the odds were low, but I  am naturally still worried.  

[cuzpach]

Thanks, trying not to.  I will do that.

[SarahL2491]

I thought I posted on this earlier but it disappeared.  I have this in the back of my neck and when I get it, I look like a seagull walking, its annoying and sometimes lasts for days and then goes away for weeks or months................that's what my doc called it too and said it was MS related.

interestingly I have had this problem since 2nd grade and people used to make fun of me, but there were years that it didn't ever show up........strange, makes me wonder if I even had MS that early, like Alex says..

[sllowe]

Don't panic. Just video tape it when she's not expecting it, and have it with your for the doc appt :)

[cuzpach]

Getting more worried, her Myoclonus (if that is what it is) seems to be spreading fast.  In a matter of a few weeks it went from small twitches to shoulder jerks, to now jerks in the knee area.  It made her buckle a few times yesterday.  I have been also noticeing when she sleeps small jerks or twitches (hard to tell).  Not too obvious but I have been seeing them.  I dont know if I am freaking myself out, but it seems to be moving fast.  

[sllowe]

Hi Cuzpach,

Welcome. I like you attitude! Especially where you mention you like outdoor activities and if MS still continuing! MS diagnosis has come along way from years past. It's caught much sooner, and a couple handfuls of meds for treatment. But, that can be discussed at a later date!

For now, know that the good advice like this can be a presenting symptom is possible, but know it can be for a number of other causes as well.

No sense in worrying about what you do not know yet :) Your a good husband to seek information for your wife and I trust you'll seek further info when/if she is ultimately facing diagnosis, i.e., seeking a second opinion for more certainty, etc.

Welcome to the forum, and be rest assured and confident that your moving along well with the appointments you have lined up for her.

-Shell

[cuzpach]

maxthecat, thanks you very much!

Sidesteps, her aunt was in her fifties and had MS for an unknown amount of time.  She was on a feeding tube and could no longer speak, now to be fair she had other issues too.  She had schizophrenia, I dont know if that was a factor too, but from what I have scene her case was extreme.  I think her health was always poor.

The doc said my wife had hyperactive reflexes, he noticed when he used his hammer on her arms and legs.

HVAC, that is great to hear, we like to do a lot of outdoor activities like hiking and camping, so I am worried about that too.  Hopefully if it is MS we can continue with these.

[HVAC]

Having MS so bad it leads to death is rare. I have had MS for 48 years and I am still mildly effected. Each case of MS is individual. I ride horses, walk my dogs, garden, and do lots of things. Now there are many drugs to help slow progression something that did not exist in 1965 when I had my first symptoms.

I thought if I had MS it was the end of the world. Today I realize it is speed bumps in my life not the end of the world.


Alex

[Sidesteps]

Hi,

Yes, unfortunately I presented with myoclonus and muscle twitching. It started with getting "sleep starts" every single night and twitching on my left side of my body. At some point, I noticed the sleep starts were happening when I was wide awake and progressed to several times. My husband lovingly started calling me twitchy. lol

I had this for about 2 1/2 years. At its height it was really bad; my left leg would jerk and my right arm, the sleep starts were every day and the twitching was all over my body.

I thought it never would go away but it has. I still get them occasionally or when I am flared they increase but it did get better.

I was told that isn't a common presentation so that through off generic neuro's. My specialist told me it wasn't typical but it was my presenting neuro symptom.

Hang in there. How did her Aunt pass away? I am sorry this really has to be worrisome.

[maxthecat43]

I'll keep your family in my thoughts and prayers.  Keep us posted, okay?

[cuzpach]

Thanks, We are getting EEG tomorrow and MRI next week.  Appointment is in two weeks for the results (doc out of town).  So far the jerks seem to be the only symptom of MS she is having, but we are still worried with family history.  Plus our children are little and I think she is worried about seeing them grow up after what happened to her Aunt.  Thanks for the info.

[maxthecat43]

Sorry, I wasn't very clear about this:  MS can attack anywhere in the brain and spinal cord.  The varied reactions have to do with nerve impulses that are affected by the lesions in the brain and spinal cord.  That's why it can affect any area, and produce almost any kind of reaction.

[maxthecat43]

Welcome to our little corner of the web, feel free to check out the health pages, on the right hand column of the page.  They can be very useful to newcomers, and were written by a doctor- who happens to have MS.

Myoclonic jerking of my left arm was what finally alerted me that I needed to see a doctor...  But it wasn't my first symptom, I was just too stubborn to admit I needed help for several years before that.  

MS can attack anywhere, and produce almost any reaction, but there are a lot of other reasons for myoclonus.  The Mayo Clinic has a list of a bunch of conditions that can cause them, and several of them are benign, or idiopathic (of unknown origin).  

I can certainly understand why you'd both be uneasy, but I'd wait to see what the tests reveal...

Tammy