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Old 07-21-2013, 11:51 AM #1
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Default Bulbar als

Hi
Am really after advice.

My symptons started in February , I woke during the night and had extreme difficulties swallowing. Went to hospital that night was sent packing with nothing wrong with you. This plus breathing problems continued for several weeks. Have had a swollen tonsil for years so had op to remove them. Since then symptons have persisted:

Swallowing difficulties
Finding it increasingly difficult to speak
Twitching all over
Muscle atrophy all over
Left side feels weaker than right
What muscle is left feels very 'spongy'

I visited a neuro and was told 99 per cent not mnd
But I seem to be getting worse

Blood results a one stage showed raised potassium levels this is now back to normal.
Kidneys were borderline whatever this means? But now back to normal
Raised platelets which has been on going for years.

The neuro made me do press ups which I can still do, I also walk 5 miles every day but feel very exhausted from this which before all this started I could do with ease.

Unfortunately my grandad died from mnd
And my auntie died from ms.

I am being told probably stress but I really don't think it is as I have gone from being virtually hyperactive to getting exhausted from trying to talk.
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Old 07-21-2013, 02:51 PM #2
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Default Re: Bulbar als

@billyp:

If you somehow do not trust your Neuro's opinion that you do not have MND/ALS, have you tried seeking a second opinion from another Neuro?

By the way, MND/ALS doesn't present itself as body wide twitching nor muscle atrophy all over in such short time.

MND starts with weakness in a specific region of the body (Bulbar region, or a hand or a leg/foot) followed by fasciculations and ending up with atrophy and, takes some time to do that. Never happens overnight nor the symptoms get better.

Had you have MND, you probably couldn't have done the push ups at your Neuro's office nor could you be walking 5 miles. No person diagnosed with MND can do that.

Regards,
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Old 07-21-2013, 10:47 PM #3
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Default Re: Bulbar als

Quote:
Originally Posted by billyp View Post
Am really after advice.

Unfortunately my grandad died from mnd
And my auntie died from ms.
Clearly you have some muscular issues and need to find a doctor who can figure out what you have. But from what you've listed here, you don't have ALS and if you did nothing you could do to change that. If you can't run 5 miles then go ahead and cut that down to a reasonable 3 miles daily over your lunch hour. 3 miles, 20 pull ups, and 100 sit-ups is my advice. Oh and go find a doctor since you have something in the family history. Good luck.
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Old 07-22-2013, 08:54 PM #4
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Default Re: Bulbar als

my PALS can do a 'push up', but then falls flat on his face - I was stunned a physio even suggested he try one...
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Old 07-24-2013, 03:04 PM #5
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Default Re: Bulbar als

My dad had ALS diagnosed and his muscle atrophy was relatively quickly (I would say over a 8 month period). He had twitching all over too. He was diagnosed with one neuro and then sent to an ALS specialist. The 2nd neuro did say that he presented with some unusual symptoms and was not certain that it was ALS so he ran another EMG that was definitive. I think a second opinion is in order for you, given family history.
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