Possibility of ALS?

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Dan77

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Firstly, I'll just like to say a big thank you to anyone who has put aside the time to read through this. I guess if we are in this space we are either suffering or know someone who is suffering, so I sincerely thank you for your time and help with my issues/questions. I have read this super helpful post. Which did help with my anxiety for some time. But things have progressed and now I find myself caught between a rock and a hard place.

I am a 27 year old male. I've been suffering with Crohn's disease for over 3 years now. That presents it's own challenges but for the most part I had it under control. However, 6 months ago I began experiencing my first "Neurological" symptoms. The first stage was extreme fatigue. My specialist attributed this to the Crohn's as it's well documented that Crohn's can cause fatigue.

2 months later I began noticing a strange "cold" feeling in my right shin, accompanied by a general weak/fatigued feeling in my legs as well as muscle twitching that was happening all over my body sporadically throughout the day. About a week or so later that cold feeling spread to my left shin. It was at this stage where my GP & specialist decided the best plan of action was to see a Neurologist. With worries about developing MS, the Neurologist suggested I do a full brain & spine MRI, as well as an EMG of my 2 legs. It turns out I had a completely normal and clean EMG, and the MRI of my brain and spine were also completely fine. These tests were approx. 1 month ago. The Neuro didn't even bring up the possibility of it being ALS, so it wasn't really on my mind at that stage.

Since I was clear of certain Neurological diseases such as MS or a Brain Tumour I was given the go ahead to up my Crohn's treatments to Biologic Infusions. My Specialist seems to think that if we minimise the Crohn's the Neurological symptoms will disappear. I've had 2 infusions to date, and have not seen an improvement but it will take months before changes will be noticeable.

About 3 weeks ago I developed a noticeable weakness in my hands. I can still complete day to day tasks, lift heavy objects, but it all seems like much more of an effort than normal. My hands tremor when I hold them out and get quite tired after typing or scrolling through my phone etc. I haven't lost movement in any limb at this stage, just a general overall feeling of weakness.

What really got me worried now was the "Globus" sensation that's come on within the past couple of days. Whether that's my anxiety building up or issues with the Crohn's I have no idea.

I just have a couple of questions to help me find a pathway to a proper diagnosis or to develop my understanding.

Since my EMG was done on my legs, do I need to go another one now on my arms/throat since I'm getting symptoms there? Or since the EMG was clear in my legs there's no way it can be ALS?

I have another appointment with the Neuro in 8 months - should I go back sooner and tell him about my ALS fear?

Once again, thank you so much for your time. Any response will be greatly appreciated.

Wishing whoever is reading this all the best.
 

lgelb

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When you have ALS, the EMG shows multiple and specific abnormalities even in areas that seem fine. So you should not need another EMG.

Extreme fatigue is not a "neurological symptom" nearly as often as a systemic one, nor is globus. Crohn's could certainly relate and I would consult with a dietician to rule out nutritional imbalances or deficiencies.

Best,
Laurie
 
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