good article

olly · 09-26-2009, 04:33 PM

i found this good article today describing mnd.
good info on the stages and meds available.
thought it would be informative for new comers.
What Is Motor Neuron Disease? What Is Amyotrophic Lateral Sclerosis (ALS), Or Lou Gehrig's Disease?

laurel · 09-26-2009, 09:13 PM

Caroline that is a very good comprehensive description. I have bookmarked it. Thank you.
Laurel

whatsgoingon · 09-27-2009, 05:48 AM

hi,

What I don't understand is why I read here all the time that twitching means nothing but this article clearly says 'symptoms during inital stage: twitching' I got the muscle twitching, cramps and pain.
I also read:
"During its initial stage MND may be difficult to diagnose because the signs and symptoms are commonly found in other diseases and conditions, such as MS (multiple sclerosis), trapped nerve, or Parkinson's disease. " --> Twitching is initial symptom and it's difficult to dx, how can I be sure it's BFS and not the initial stage of ALS?

It doesn't make sense to me

Thank you
Justin

SandraD · 09-27-2009, 10:27 AM

HI Justin,

I think the benign cramping syndrome causes muscle cramping (which is pain) and twitching, but not weakness and the other signs. I read this article, too, and the list of symptoms in the initial stages is alarming to me, as I have every one, with the exception of slurred speech. still, I had a normal EMG about two months into some, but not all, of these symptoms. other symptoms have progressed since that EMG, which was 3 months ago. I was told by a specialist in neuromuscular disease that he does not think I have ALS, but may have a neuro disease that has not fully manifested itself (he did not mention the possibilities). So far all tests have been normal, with the exception of a brain MRI which showed some lesions or hyperintensities that this neuro thinks are not related to these symptoms. I am seeking a second opinion at a large hospital with a well-regarded neuro dept.

anyway, if you do not have weakness and some of these other symptoms, such as clumsiness, fatigue, etc., I would stick with the benign fasciculation possibility.

Sandra

whatsgoingon · 09-27-2009, 11:32 AM

I'm very tired lately, but is that the fatigue they are referring too? The twitching if going on for 19 months widespread.

Naeco · 09-27-2009, 12:29 PM

Justin,

I second what Sandra said about not worrying about ALS unless you have weakness. Even with having all the symptoms listed in the initial stage and even a substantial number from the second stage, my GP at the Mayo wrote in his initial report report that it might be diferrent variation of CFS. There are just so many pieces to this puzzle that it probably isn't productive to consider ALS until there's a sign of clinical weakness (not percieved). You would need a doctor to test for this. I didn't even know that I had clinical weakness until my doctor tested for it. I had so much fatigue that I didn't even realize that the strength was gone on my hands. It can be difficult to see the difference when it all hits you at once. It might be a good idea to have a GP test for weakness if the fatigue is limiting your ability to perform normal tasks because you probably wouldn't notice the weakness at that point - at least that was the case with me.

Good luck with everything. Hope you get some answerrs soon

-John

SandraD · 09-27-2009, 01:03 PM

Hi John,

I didn't actually read the whole article, but looking at it again, I, too, also have symptoms under the advanced area, such as joint pain, thinning of arm and hand muscles, etc. that's interesting about CFS-- that's chronic fatigue syndrome, right? I did not realize that chronic fatigue included many of these symptoms- is that what they are thinking you have? I wonder if I should ask the neuro about this at Mass General.

Sandra

Naeco · 09-27-2009, 01:57 PM

Hey Sandra, CFS was the thought during my first visit to the Mayo about a month ago, but ever since that time, all the tests have been pointing to something neurological. Everytime I have a weird response to one of the tests, they quickly schedule me for a new round of test. They sent me a new schedule yesterday that included another MRI (not sure what for) so I'll be doing that prior to meeting with the Neuro and GP later in the day tomorrow.

olly · 09-27-2009, 02:37 PM

i did not post the article for those who are un-dx to worry about symptoms.
sorry if it has caused any anxiety.

i thought the way it was all explained and put together was very good.
the list of meds for various symptoms was good,also the list of possible causes scientists feel could contribute to developing mnd.

the article does give the list of tests needed and the criteria for a dx of als...........that is umn and lmn signs in three seperate areas.
yes twitching is mentioned as "one" of the symptoms but its not the whole picture.
twitching and any other symptoms with a clean emg and neuro exam points to something other than als.

maryam_rastkar · 09-27-2009, 03:18 PM

dear caroline
the article was very interesting
thank you very much
you know , my father' got the desease and he never speaks about it
it really helped me know more about MND

maryam_rastkar · 09-27-2009, 03:22 PM

"Change in personality and emotional state - often a patient at this stage experiences emotional lability (bouts of uncontrollable crying or laughing"
you know, my father really has this sympthom of the advanced stage
and we were allways wondering why his emotions have become this much strong
specially about crying

SandraD · 09-27-2009, 04:12 PM

Caroline- no worries on the article. it was very informative. I suppose until we receive some sort of diagnosis, those of us with troubling symptoms are bound to worry, anyway. thanks for posting the article.

Sandra

olly · 09-27-2009, 04:12 PM

thankyou maryam for your kind words.

i thought the excessive yawning was intresting,i have pls(leg onset)10yrs now.
developed bulbar symptoms a few years ago and since then started the uncontrollable yawning for no reason but did not know why.
now i know its another symptom,though not a bad one so its ok.