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Sidney

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Learn about ALS
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UK
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Hi

I have been a regular poster on here but would like a little more advice and patience please.

My last EMG showed denervation in feet and shin but nowhere else. I have had fasis for a year and as we speak I am sitting in a sleepcentre awaiting a study as I hypoventilate at night and have had a year of interrupted sleep.

Very good neuro has diagnosed for now distal moto sensory autonomic polyneuropathy.

However neuro wants new EMG in3 months and to see me again in four.

He has admitted that for the next year and I'm a year in that als is on the table.

Could I ask the example experts on here if they feel als is on the cards.Not going to lie but when I heard the word denervation I freaked.

As we speak though no clinical weakness.

Many thanks in advance.Please do believe me that this is much more than anxiety.

Cheers


Sid
 
Sid, with no clinical weakness and only localized denervation a year in, ALS is scarcely "on the table," esp. if you have breathing compromise but nothing is showing up in that region.

Best,
Laurie
 
Thank you Laurie. I'm relieved and respect your opinion. It is the neuro that has left als on the table. Hence the concern
 
I'm having 02 and co2 tests tonight but Fvc and snip tests were fine
 
Hi Sid. Help me understand your situation. You can talk, eat, walk, run, and carry a bag of groceries. What can you NOT do?
 
I can't run Mike due to weak ankles and numb feet. I can't sleep due to shallow breathing but yes I accept your point. At the moment no clinical weakness which I'm praying stays that way
 
What's that, four EMGs? Several neuros? I suppose they could all be wrong or perhaps they've all missed something. You're what, 58 years old, with children in school, yes?

Well, I'm not a medic, but I am a father, so I'll limit my advice to what I think is the most important matter.

IF, 4 months from now, you get a diagnosis of ALS, I think you would want to ensure that your kids are brought up well after you're gone. O the other hand, if you get a diagnosis of something treatable, you would want the same thing.

In my mind, if I were in your shoes, I would try to be the best dad I could. There is no harm in planning for your own demise--you could get hit by a bus, too. So this is a wonderful opportunity to get your priorities in order.

It's sad for me when I see someone under such stress. So let's treat that anxiety, depression, and other things that make your life less than optimal. No doubt you want to be a role model for your kids. So if I were you, I would treat that anxiety first--see a therapist who can help you be the best dad you can. That's the only way you're going to be able to keep your sanity for the next four months.

And no, I don't see ALS in your posts.
 
Thank you. I'm a Grandad actually and have tried everything stress wise but thanks. I will however take your last sentence away with me as hope.
 
Did sleep study last night. Co2 is 5.8 .Upper limit is 6 so just within normal but 02 saturation is terrible and points to needing CPAP.

Poly somograph doesn't come back for a week to see if I have central or obstructive sleep apnea.

Pointed out I didn't have sleep apnea at all before the fasics etc started.I believe it can be also related to als?

Then to top it all in sleep study room legs begin shaking uncontrollably.I google why and lo and behold 'clonus' appears and a I see a you tube video showing exactly what happened to my legs.

How the hell is this not als?

Neuro appt has been brought forward.
 
Let's put up a list of diseases on the chalkboard, numbered 1 through 10. All of these diseases can see fascics and also clonus. The diseases are listed in order of probability, the one on top is a common disease, the one at the bottom is a rare disease.

You are looking at the symptoms, then skipping diseases 1-9 and going straight to 10, which is ALS.

Of course, everything I say comes with a caveat: I'm not a doctor and I can't examine you. So that brings up the next thing. A bunch of doctors have examined you. It is your choice, of course, to second-guess them.

I stick with my advice--make the most of each day and enjoy life to the fullest. In order to do that, you're going to have to get mental health help.
 
Thank you for your input Mike. I pray for a positive outcome and recognise how selfless you guys are in giving advice to people in my position
 
Shaking legs in sleep can be restless leg syndrome or the equivalent since you have been dx'd with a neuropathy; the arms can also be affected, and some people have problems even when not in sleep. Ask your doc about trying a small amount of supplemental iron and magnesium, with a balanced B complex, in the short term.
 
Thank you. I was concerned by the rippling effect while the muscles were shaking
 
Hi.

So got some bad news last night. My sleep study indicated low saturation (67 per cent )and severe apnoea (44 episodes per hour). 30 is regarded as severe.I will have to do CPAP now.

I now have denervation on emg and high ck as well.

Surely this has to be mnd?

According to the neuro and respiratory specialist the jury is still out.


What does everyone think?

Sid.
 
Hi Sid

Did you go into Papworth for breathing function tests? I was told at my assessment that Bipap not CPap is what you need if they think it's mnd. So maybe the fact that they are considering cpap is a good sign as it may be something else.
Good luck with it all

Wendy x
 
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