Weirdest symptom

Lookin4answers

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Hi,
I'm a father of 4 who had noticeable symptoms start in Jan 2020. I have too many symptoms to list here but the main ones are loss of muscle in the forearms and lower legs (I've also lost hairs on my legs). I've had seizures, 15 brain lesions, incredible joint pain, brain fog, twitches, plus plus plus.... I'm still walking but can only manage about 1km before getting tired and then my entire right arm goes numb.

Been seeing the best neuro in Melbourne since Jan 2020 and still waiting for a clear diagnosis. He is confused between MS and ALS or possibly something completely different.

I'm trying to rule out ALSO by myself, has anyone had this weird symptom... When I get up or move too quickly it's like my joints/bone can move out of place and crack. Happens all over my body in my sleep, arms, spine, legs, neck etc... Thinking this is possibly happening because of a lack of muscle but that is just a thought.

Hope you guys can help.
 

lgelb

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I should think "the best neurologist in Melbourne" (I'm sure our Aussies can better comment if you have the name) could diagnose MS, ALS, or some other neurological disorder, if/as applicable, based on what sound like pretty florid manifestations. At any rate, nearly two years in, I'd be long since obtaining a second opinion, and this isn't it.

The picture you paint, including diffuse joint crackling across the body, does not, however, suggest ALS in any respect. If you care to post your EMG, I would be interested to understand how it supports ALS as still being part of the differential.

To answer your question, such crackling would not suggest loss of muscle around all the joints for two major reasons: a major loss of muscle at every joint would impede your function more than you describe, and in addition would cause subluxation or dislocation as bones would be pulled out of place. The reason ALS typically doesn't cause subluxated or dislocated joints is that muscle atrophy (except in flail arm cases, not what you're describing at all), is not focused around the joints especially.

Best,
Laurie
 

Lookin4answers

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Hi Laurie,
I truly appreciate your response.🙏
I did get a second opinion but the 2nd neuro said if the first neuro says to wait I agree with him. He said it didn't look like anything conclusive at the time. Leaning towards MS but only because of the lesions. Symptoms not necessarily suggestive of MS.
EMG study was normal. Pic Attached for reference.
I read on another forum about a patient who had these cracking joints and lesions and 10 years later she was still waiting for a diagnosis. Hope that's not me.
 

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Hey, sorry you have been having these issues.
I'm an aussie, would you like to tell us who you are seeing and where?
 

lgelb

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With seizures and brain lesions, I would look for a second opinion from a seizure disorder specialist -- not the same as a neuromuscular specialist.

I only see one page of tracings from the EMG? The text tables and report will help us more than the tracings.

At any rate, this only supports that you have no reason to worry about ALS.
 

Lookin4answers

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Currently seeing Professor Plummer from St Vincent.
 
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