anybody dx'd and have fasciculations?

[Chantele]

OK my doctor must be a big ol' bottle o' crazy sauce. We were going over my symptoms (for millionth time). I like to pretend that he just forgets them every time ; ) and I have no spasticity, but right now I am havin a whooooole lot of fasciculations. I can harldy sleep at night for the overwhelming twitchiness and cramps! Right away he acts like this is something completely knew that we have never talked about (for the millionth time) and gets a weird look on his face. Here's where I get to the point... He told me that that is not a symptom of MS (not that that should bother me).HUH?? So now he throws the 3 letters that I never wanted to hear (EVER) out there... ALS as a possibility. So I was wondering if anyone here (call me crazy doc) has had these symptoms. It's mostly in my legs but has now worked its way all the way up my middle, arms, and face. Oh and while I'm asking is there anything at all to help the leg cramps? (doc was very unhelpful). Poppin ibuprofen little skittles doesn't help.

Thanks
Chantele

[MCBCON]

hmm, valium.  I will talk to my neuro about that?

[Guitar_grrrl]

Hi,

I'm diagnosed with RRMS with a negative LP, a positive MRI (old lesions - nothing that lit up), and a positive neuro exam.  

I'm here to tell you, fasciculations DO happen in my legs (especially as a spasm is relaxing) from the ankles to the thighs, my upper arms, and around my eyes.  I take Valium for the spasms at bedtime, and it doesn't always keep the spasms from coming, but at least I can get back to sleep when they occur. I asked my neuro about ALS, and he said "No way!".


HTH,
Guitar_grrrl

[MCBCON]

way to many

[MsWobbles]

I think your current neuro is doing you a favor by not wanting you to have a spinal tap (LP).  So many of us have had them and they usually don't yield much information for diagnosing.  

A spinal tap may be a benign, easy experience or it may be a horrendous nightmare - all depending on who is doing the spinal tap and also on your own anatomy.

My spinal tap (and its repercussions) was the worst experience of my life and it didn't help me one bit toward a diagnosis.  

Were your MRIs done on a 3 Tesla machine?  If not, maybe you should focus on that since Quixotic1 and others whose MRIs were previously clean became positive for MS when they were later done on 3Tesla.

Also, how about evoked potentials?  I am aware of someone locally who got her diagnosis finalized due to them.  

Good luck leaving limboland!!

WAF

[Chantele]

Thanks everybody so much!! My doctor has been trying to diagnose me with MS for a while now. My symptoms are all there and it's been going on for about 3 years. I've had some MRIs and they're all clean. I'm shooting for an LP but he doesn't seem interested in doing that now that I've mentioned this symptom again. I think he should be even more willing since that could potentially help my MS dx. I'm seriously close to changing doctors. Oh and to answer essdipity's question, yes I can see them going all the way up and down my legs (and everywhere else they are). It lasts all day so by the time I go to bed I feel like I've just ran a marathon. Blood work didn't show anything lacking in my diet or anything else out of the ordinary for that matter. I think I'll add new neuro to my shopping list next week. Thanks everyone for all your help!

Very twitchy & thankful!
Chantele

[biowham]

I absolutely do not have ALS, and my current dx is cervical myelopathy possible secondary to MS, and I have fasciculations in my feet, thumbs, and left calf, in addition to some larger muscle contractions.

Bio

[wadeheather]

Ah! I have very severe fasciculations. They have been in my eye for about six weeks now and I get them daily thoroughout the rest of my body.  Mostly my arms, sometimes my legs. My right shoulder and hip actually jerk.  I have not been diagnosed with MS or ALS, however I have researched both, along with Lupus. I have been fighting many symptoms for close to a year, with no real take away, but the tingling and fasciculations were the first aside from chronic headaches that I fought for two years before they started.  Please let me know if you find anything out.  I feel your pain. I'm right there with you.

WH

[HVAC]

Yes I have fasciculations and MS. It was one of my first symptoms. I have it mostly in my left arm. Lifting 3 pound hand weights has helped me. I was told it happens in weakened  or less used muscles. I don't know if that is true. You can actually see my muscles moving and I don't have ALS. Drinking lots of water is also important. Those with caffeine or carbonation are not good for hydration.

Alex

[MsWobbles]

Yes, I have had your symptoms and, yes, I have also had to confront those scary and unwanted three letters:  ALS.  To put you a little more at ease, not very many people in your age group end up diagnosed with ALS.  There are some, but very few.  So that is a point in your favor.  I, however, am in the prime age group for ALS.

Actually, your doctor is unusual in that he actually mentioned ALS:  I find that most in the medical field either pretend ALS doesn't exist or insist it is very, very rare (it is not!).

When you have the fasciculations, can you actually see waves of movement going up your limb?  Many with ALS can see that movement.  

I don't think you should focus on ALS since, by age, you are not likely to have ALS - also because it is very hard to get an ALS diagnosis unless you are fairly far along.  However, a great website on Yahoo for asking questions about ALS is called "Living With ALS".  Make sure you google "Yahoo Living With ALS" (because there are other sites called Living With ALS that aren't the one I suggest).  It has great people who will respond to you.  Most with ALS end of dying of respiratory failure.  Nighttime breathing issues are a definite part of ALS.  

Baclofen and skelaxin can help with the leg cramps.  Some have found quinine water helpful.

In your place, I'd look at everything except ALS at this point.  Get checked out for MS first.  They'll listen to you: You're in the accepted age group!!  

Maybe what you're experiencing is related to something simple - something that can be solved easily with nutritional supplements or medication.

Good luck to you!!

WAF

Good luck to you!!

WAF

[essdipity]

Hi. I don't know a lot about fasciculations, but I do know this can happen with a lot of disorders, some of them totally harmless, aside from the annoyance and sleep factors. You should certainly follow Lulu's advice and read up here. One remedy discussed a lot is mineral supplements, which help a lot of people.

I think your doctor is being reckless and unprofessional in suggesting you might have an extremely serious disease without doing a great deal of testing before even mentioning it. To the limited extent of my knowledge, ALS's major symptom is muscle weakness. Whatever else happens is secondary. So is this one of your symptoms, and has this been tested and officially evaluated, perhaps by a physical therapist? Unless or until that happens, I think the idea of ALS should be banished.

Best wishes to you,
ess

[Lulu54]

Hi Chantele,
I can't speak to your question, but did a search of our archives and find lots of discussions about fasciculations.  There's enough there to tell me your doctor needs to be better educated about MS symptoms.

Here is one post that might be of interest and help to reassure you -
http://www.medhelp.org/posts/Multiple-Sclerosis/MS-or-ALS/show/717673

If you put in the search box "fasciculations" you will get an extensive length of threads to read.

be well,
Lulu