Am I misunderstanding?

[wellington]

I've got to ask a question about twitches. (I know, I know, I can hear you all groaning!)

Are there different types of twitches? I'm thinking there must be. I have twitches; they don't hurt, and they are the least of my problems.

I'm always surprised when people talk of 'body-wide' twitches as their primary symptom and expect that you all will be as worried as they are. After all - many of you fine people have ALS and ... well ... they just have body-wide twitches.

The stickies are clear, your comments are clear. Twitches in ALS don't come along (if at all) until there's impairment, clinical weakness, etc. AND the twitches people do get are localised to the problem limbs, etc.

I have not been diagnosed with ALS. Whether or not I will be remains to be seen. At the moment, it looks like my diagnosis might be multiple system atrophy and not ALS. I have a bad left leg, and a bad right arm, and speech and swallowing difficulties. Only in THESE places do I have twitches, and while every symptom I have is consistent and gets worse (weakness, spasms, swallowing), the twitches come and go, and they didn't even start until AFTER the impairment.

So, do some people have twitches that hurt or impair them in some way? Am I not being sympathetic enough? Or is just that they've read the wrong sites and think is a hallmark of ALS?

Lilly

PS. You guys are wonderful. I got some great advice a few months back. And you are a wonderful example of how to live a good life whatever is thrown at you. Thanks again.

 

[Toto's Dorothy]

Lilly,

Yes, there are different types of twi tches. Those that come on here usually have oo gled doc tor go og le and up pops ALS. The problem is, he puts all the symp toms in the pot and doesn't explain very well. Those people usually have body wide twi tch ing and its associated with B F S.

The twi tch ing I have is very similar to yours. Where the weakness and atrophy started, that is where I have the twi tch ing now. It just started a few months ago. And like I said, right foot = arch, left arm = back of bicep, right hand was last = between thumb and first finger. No body wide twi tch ing here.

May I ask, since I have not read your previous posts, have you had an EMG? What tests have you had done? And are they any closer to giving you a dia gno sis?

 

[Toto's Dorothy]

Lilly, I posted. It went to Mod land, it will be up later. Sorry guys, I must be speaking with forked tongue. I will try better, I promise!

 

[Alyoop]

Without the Internet, I doubt anyone took much notice of twitches. They are very common in healthy people, especially after exercise.

Its a weird feeling and so they consult Dr g o o g l e. People have way too much time to worry about nothing. If you were busy digging coal, I doubt you would notice. People with generalised twitching, get very stressed when they read about one of the many causes, which happens to be terminal. They forget to look at the larger picture. The anxiety commonly leads to bulbar symptoms, which of course, are in themselves, common with anxiety. A vicious and horrible cycle.

We need to drop the self diagnosis, hysteria and try and work a lot harder. Twitches don't hurt, so get on with it. We are all getting way too precious?

 

[wellington]

Thank you Alyoop. I expect you are absolutely right. As you say twitches don't hurt, and without the internet, you'd probably just think - well isn't that curious and not worry about it. I like the comment about 'digging coal'.

Toto's Dorothy - my neurologist has tested me for many many neurological diseases (MS, MG, various ataxias), but so far I've only had one very minor EMG - just one needle in one thigh. I've also had a swallowing test. Some abnormalities with my soft palate and tongue have been identified.

For a year or so, the neuro was convinced I had MS, but was just not showing the right brain lesions yet. He's given that idea away now. He tells me I have a rare neurodegenerative disease, but as yet he's not sure which one. At my last visit we talked ALS and Multiple System Atrophy, both are pretty awful, but ALS is worse.

I think I probably don't have ALS because I've had symptoms for almost 20 months, and while I stumble and trip and my drinks come out my nose, I would have thought I would have progressed more by now if it were ALS. Also I have some autonomic symptoms.

I see my neuro again in a few weeks. We've agreed to 'get serious' then - drugs, testing. I've had my head in the sand a bit.

Thank you for your interest Toto. I've read many of your posts, and they are always so upbeat. I think you are inspirational.

Lilly

Lilly

 

[Alyoop]

Lilly, it great to hear that you obviously have a switched on neurologist. I do hope it's all sorted out for you. You have been patiently waiting for answers for a long time. Many neurological illnesses are so complex!

I had dinner with a rep who sells MS Treatment. My husband and him were discussing, how they frequently come across patients who have clinically got MS, with totally clear MRIs. They are put into limbo land, only to rock up a couple of years later with MRI scans lit up like a fairground with ms lesions,..........in other words, nothings clear cut in neurology.

I wish you the best, keep us posted
Aly

 

[wellington]

Thank you Alyoop, I will. It sounds weird, but I was praying for the 'right' lesions at my last MRI. I have plenty of non-MS typical lesions apparently. While MS is bad, the alternatives are much worse. The neuro thinks I might be getting a bit old for MS now. I'm 48.

All the best
Lilly

 

[Alyoop]

There's plenty of people around your age who get MS, I've had a couple on a clinical trial I am doing.
Don't worry, I cried when my scan didn't show MS, totally get where you are coming from.

Best wishes