Can an inflamed Brainstem Lesion Rule Out ALS

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Hoagie

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Hi all. Sorry to come hear undiagnosed, but I am going out of my mind atm...

For the past year now, I have been dealing with some somewhat progressive walking-coordination symptoms, which some days are better than others.

My MRI last year showed a 6mm lesion at the midbrain-pons junction. My neurologist says this is the issue for my walking troubles. However, I have also been diagnosed with Lyme disease, and my lyme dr believes there is motor neuron involvement due to my fasciculations and core weakness. All I can think of is ALS.

So, I was still concerned that this may be ALS because I had another neuro say that the lesions was so small that I should be ok. However, there is quite a bit of inflammation surrounding the lesion that got bigger initially, but is now receding by the looks of my last MRI.

I also just received some unfortunate news of an lyme patient I friended over the internet has been diagnosed with ALS and is doing very poorly. It has broken my heart and has me scared and anxious.

Lately, I seem to be having trouble stumbling over certain words. Especially when I am fatigued. I read that ALS, on average, takes about a year to diagnose from onset of symptoms. It has been a year, and I can't seem to get this diagnosis off my mind.

I have searched the internet trying to find the same symptoms I am having due to a lesion in the same are as mine. The problem is, I can't find any scenarios where someone had, or a study was done on the symptoms of an inflamed lesion at the pons-midbrain junction...

Thank you so much for reading this and I look forward to your responses.
 

KimT

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Is your "lyme doctor" a board certified infectious disease physician?

If you are fixated on ALS and worried you might have it, you should make an appointment with a neuromuscular specialist to be evaluated.

You are very close to Dr. Bedlack at Duke. He should be able to help you sort all this out.
 

Hoagie

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Is your "lyme doctor" a board certified infectious disease physician?

If you are fixated on ALS and worried you might have it, you should make an appointment with a neuromuscular specialist to be evaluated.

You are very close to Dr. Bedlack at Duke. He should be able to help you sort all this out.
He is. I'm guessing you know who I am talking about. He has scared the living .... out of me.

Thank you for the recommendation. I am about 90 minutes from Duke. I'll check into it.
 

Vincent

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Lesions would point to ms more than als. The easiest way to explain the difference is with squirrels in your attic. If the squirrels just eat the insulation on the wires( lesions) you have weird short circuits and the lights flicker, the coffee maker works sometimes, the circuit breakers trip, that sort of thing. That is ms. In ALS the squirrels eat right through the wires. The motor neurons die. The coffee maker, the lights, the fridge, nothing on that wire works anymore. \It is kind of simplified but easy to see the difference. In als there are no visible lesions.
Vincent
 

Hoagie

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Hi Vincent. Thank you for your response and the assurance. I truly appreciate it.:)
 
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