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muscle jerking and extremely stiff muscles, other stuff too

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Posted 11/6/2009 4:14 AM (GMT 0)
Hi everyone,

 

I'm having some interesting symptoms that don't fall into the Lupus category. Having one autoimmune disease certainly puts me at risk for other ones.  Here's what's happening....

 

Crazy, sometimes violent muscle spasms (jerking).  They come out of nowhere and can send my head jerking out to one side, or my legs, arms, and entire sides of my body. It's really intense. Not little muscle spasms, but huge ones!  Sometimes the head jerking gets painful because my neck muscles are so incredibly tight. that leads me to the next part....

 

What does it mean to have tight muscles with MS?  I have really tight muscles in my neck, shoulders and back. Most of the time I can't move my head around. I have very limited mobility.

 

My speech. Over the last couple of months, I've been having a lot of issues with slurred speach, not being able to form words properly. I know what I need to say but I can't get it out!  It makes me feel really stupid.

 

Difficulty swallowing.  Is this a symptom of MS?  There are times where I literally can't swallow.  Like I've lost all control. It freaks me out.

 

I do get some weird vision stuff.  Sometimes double vision but it only lasts maybe 20 minutes and then goes away.   

 

I have the numbness and tingling, but I've been attributing that to my Lupus. Same with the extreme fatigue stuff. I haven't had an MRI in two years.  I definitely am seeing my primary about all this next week.  I just wanted some more information to take with me. 

Thanks for reading all this!

Ginny 

Posted 11/6/2009 4:39 AM (GMT 0)
Hi Ginny,

I really feel for you....you are NOT alone! This sounds SO much like what I've been going through for the past two years! The muscle spasms are called tonic spasms; they were one of my first symptoms. I had them mostly in my hands, feet and ankles. I could watch my foot go into a spasm that would literally pull my little toe out sideways, and I had to grab it to make it stop because it felt like it was going to break my toe!

I too have trouble with speech at times (mouth feels "clumsy", hard to form words, sometimes I bite my tongue), plus swallowing (dysphagia). For example, pills get stuck in my throat and I have to wait for my throat to relax before they start moving again.

I had a cluster of these symptoms for a few months last year, then they mostly went away around the time I went gluten free, so I thought they were mainly due to celiac disease. But now they're back.

I've been having double vision almost continually now for months. Sometimes it turns into triple vision. I had an MRI last year but I'm scheduled for another one next week.

I should let you know that I'm already diagnosed with multiple autoimmune diseases plus fibro. I was just diagnosed with SLE last month.

Anyway, last week I went to my neurologist last week with a list of ALL of my symptoms, which include:

1. vertigo (all the time)
2. nausea
3. extreme fatigue (all the time)
4. narcoleptic episodes
5. blurry vision
6. double/triple vision (vertical)
7. "see things" moving/flash out of the corner of my eyes when I move my eyes
8. headaches/migraines
9. hearing loss
10. tinnitis
11. extreme brain fog
12. difficulty swallowing
13. difficulty speaking
14. Raynaud's phenomena
15. peripheral neuropathy, pins and needles in hands and feet
16. numb patches in random spots (side of thigh, toes on right foot, etc)
17. tonic spasms

He just looked at me like "Oh no, she's a hypochondriac". But I asked him to test me for EVERYTHING: MS, Lyme disease, B-12 deficiency, you name it. So he's doing it.

I don't know if I have MS or not.....although the fact that I've had two "episodes" of these symptoms is indicative of MS. I really want to get to the bottom of this!! I should have results of all tests by my birthday (11/23).

IMHO, you should ask your doctor to run a similar set of tests to rule out all of these things and to narrow down the possibilities.

Good luck with everything! I hope you start feeling better soon!
JoAnn
Posted 11/6/2009 5:47 AM (GMT 0)
Hey Ginny,

I am sorry you find yourself posting here.  You indeed have symptoms fairly common to MS.  The jerking muscles are called tonic or paroxysmal.  They are usually stereotypical and will happen a few times in hour/day/minute.  They can be and usually are painful.  MS spasticity is what you describe with the stiff neck and upper back.  Even the location is typical for MS.  I have that as well.  My spasticity has pulled a neck vertebra into herniation.  Spasticity can be treated with meds and those are not specific to MS.  Lots of folks use baclofen, it is a very helpful med for me. 

Slurred speech is not uncommon as well as "lost words".  The latter is considered part of the cognitive damage that can occur in some.  (50% if MSers demonstrate cognitive dysfunctions)

Swallowing problems are a bit more rare in MS but still considered a major symptom.  Usually it starts with choking easily on liquids. Many people benefit from PT in this area.  Always drinking a little water before eating can relieve some symptoms of swallowing difficulty. 

Vision issues are extremely common with MS as well as numbness and tingling.  I am just getting over a bout of optic neuritis.  I still can't see well in my right eye.  Two weeks ago, I was legally blind in that eye.  No color, very blurry. 

You need to see your doc and you need to see a neurologist.  Preferrably an MS specialist.  Below is my favorite diagnostic link.  It is very clear as to how you get an MS diagnosis.  Be prepared for a long, frustrating process even if MS is cleared.  If you have a recent (that one you had two years ago counts) MRI, it can be very helpful for comparison.  Try to return to the same lab so they will compare for you.  Please keep us posted.

 http://www.mult-sclerosis.org/diagnosingms.html

 

Posted 11/6/2009 3:35 PM (GMT 0)
Thank you JoAnne and Gretchen for the great information.  The muscle spasms are non stop. I get little spasms all over my body and they go 24/7!  The big jerks, tonic as you mentioned happen probably a dozen times every day.  Most of the time they happen when I'm sitting at the computer or watching t.v..  They do happen when I'm moving around, but not as often.

 

I feel sick to my stomach, Gretchen.  Reading about the MS spasticity.  I've been living with this unbelievable neck, upper back muscle pain for a long time.  Probably 5 years.  My doctors and I always attributed it to my fibro. I mean, it could still be my fibro, so I shouldn't jump to conclusions yet!  I've had enough experience with autoimmunity to know better!  Gosh, the symtoms of MS and Lupus are so closely matched.  This will be an interesting and probably frustrating journey shakehead .

 

I will keep you posted.  Thank you again!

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