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Sidney

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Joined
Jan 9, 2016
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Learn about ALS
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Country
UK
State
LO
City
London
Hi.Firstly thank you in advance for your time.I'm aware that people I'm asking advice from are already dealing with this disease which is why I've stayed away from this forum.

My story is I presented with widespread calf fasiculations,weight loss,muscle wastage and have now have now had clinical exams ,bloods and EMG's from two reputable Neuro's at MND centres in the UK.Both have diagnosed BFS which I should be cock a hoop about.However I didn't really mention to either my voice cracking and shortness of breath/waking up at night and the feeling that an elephant is sitting on my chest.My fault and very dumb.

My fasiculations have now spread to all over my body and shortness of breath is worse.Would the EMG and clinical have picked up any of this?

I rang back the Neuros and they said the breathlessness would be such that I couldn't talk.Would this be correct in the early stages?

The obvious advice I know is just listen to the Neuros which is hard when you're having trouble breathing and twitching all over.

Could someone advise please?
 
Re: breathlessness. My neurologist and respiratory Dr have said the same thing to me once before. I know at times when I'm short of breath I can only say a few words at a time! So yes I do believe they're right. I can't walk 10 meters without being puffed out and I've only just started having breathing problems.
Is it possible that as your worried about your health that the waking up breathless with a tight chest is anxiety
I have a friend who described exactly that , and it turned out to be anxiety due to work situation
I have moderate speech problems and mild swallowing difficulty and I never had voice cracking ever
Yes please listen to the neurologist
Twitching can be annoying but in your case they said it's harmless, eventually you will notice it less , the more you think about it the more you will notice it
Take care
 
Many thanks Twitchy.Such a sensible post and kind of you to reply..I'll take what you say on board.Trouble with this stress/anxiety thingsits so hard to tell what is and isn't real.
 
Additional question please.Can rib pain be part of MND?Possibly while muscles are wasting?Suffering a lot with this at the moment.
 
Hi. I got in to see Neuro again and did lung function tests. All ok. I did sense they were now concerned about calf and chest muscle atrophy though. Asked me back in two months. My symptoms now are body wide fasiculations, muscle atrophy in calves chest Nd stomach, weight loss and suffocation feeling. Anyone care to guider as to where I stand diagnosis wise please?
 
Two EMGs pointed at BFS. Great!

"Come back in two months" isn't something you'd say to a very serious disease, I wouldn't think.

Your posts don't describe ALS, but they make a really strong case for severe health anxiety. Better get that fixed.

If I were you, I'd just ask for anxiety meds and try some therapy.

Another thing: You wrote that you "sensed" that were concerned about.... That tells me you're not asking enough questions. Poor communication leads to fear, leads to more anxiety.
 
Thanks Mike. Good advice. Unfortunately I'm a shy person and often find myself ushered out of the room before I've asked everything. The NHs in the UK is like that
 
Next time bring a brief request for health anxiety (if that's your best guess) help, in writing and hand it to the doc at the beginning of the visit, with words to the effect of, "I'm shy, but here's what I hope can happen today." You could also perhaps e-mail or fax.

Best,
Laurie
 
Thanks Laurie. Good thinking
 
Thoracic onset

As I have recently posted I am due a follow up with the Neuro in two months. My chest is permanently sore as are my ribs. My voice cracks as I speak and my ribs and chest hurt when I speak. Does this sound like Thoracic onset to anyone who knows? Many thanks in advance for your precious time
 
Hi. I am now two months away from seeing a Neuro for a follow up. I have chest and rib pain whilst speaking and muscle wasting in the middle of my chest between pecs. Could this be thoracic onset?
 
Hi. Can I ask about thoracic onset? I have chest and rib pain when I talk plus pectoral muscle wasting. Is this what Thoracic onset is please?
 
No Sidney
No chest or rib pain occurs when the thoracic muscles weaken.
I had no idea each time my lung function declined until I was actually tested
Hang in there not long till your appointment
Make sure you take the letter laurie suggested, I too took letters with me with questions etc otherwise I'd forget 75% of them
 
Thanks Twitchy. Will do. I have been told that as muscles around ribs(intercostals) become weak they get painful. Is this true? That's what this feels like
 
It's important to understand the nature of "weakness."

In ALS, the muscle isn't the problem, it's the nerve in the brain that controls the muscle. In ALS, your muscle doesn't perform well--or at all--because the nerve is damaged. For this reason, the ALS patient has weakness, but the muscle itself never gets tired, burning, or feeling weak at all.
 
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