Can a Brainstem Lesion Rule Out ALS

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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 laso been diagnosed with Lyme disease, and my lyme dr believes there is motor neuron involvement due to my fasciculations and core weakness.

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.

Within the past few days my fasciculations have hit an all time high. And 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...

 

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6 Replies

  • Posted

    Hi Stephen,

    Im not a doctor but i have been suffering from similar issues for the past 4 years or so, i firmly believe that you do not have ALS, same as in my case as initially i had severe fatigue, twitching, spasms , ive had a series of other symptoms including speech issues, swallowing issues, breathing issues, feeling of weakness in hands and arms, legs, balance issues, dizziness, etc etc, i had 4 EMGS in a span of 2 and a half years and nothing was found, i had 2 MRI'S and nothing significant was found, had numerous other test and blood work and apart from usual issues people have nothing was found. I think you need to get off the ALS boat, most likely your issues are a combination of a few factors, it could be slightly due to the lesion, could be a sleep disorder, also since you have been diagnosed with Lyme alot of the symptoms mimic ALS. You should actually be glad that atleast you have a few factors that can explain these issues, in my case its been a waiting game for 4 years and i have to deal with it on a daily basis even until today. 

    I suggest keep working with your doctors, im pretty confident its nothing serious and treatable.

    Hang in there !

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  • Posted

    Thank you ozcar! And I'm sorry to hear of your troubles. I hope you find answers soon and that can be fixed. 

    I was afraid of ALS about 6 months ago. Forgot about it while I was doing hyperbaric treatment, which seemed to help me a great deal. But, now that I have finished my treatments, the symptoms are coming back. Anxiety is a huge one.

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  • Posted

    Seems Lyme disease been really bad this year . On face book saw been out break of it this is so sad. Also so what will they be doing about the Lesion and can they do any thing about it?
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  • Posted

    Hi Caroline.

    Yeah, it seems Lyme has really been ramping up. We are testing my daughter for it as well. She has been having some odd symptoms and was also bit on the same camping trip I was. However, she did not present with the bulls eye rash. But, that doesn't mean she didn't get it.

    As for the lesion, since it is in the midbrain, the neurosurgeon wants to wait and see what it does. He says that where the inflammation is, that it would affect my walking. But I always fear the worst. Whenever my fasciculations ramp up, I freak out.

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    • Posted

      Aww Stephan that’s not good you have kids to . Sorry about your daughter your right you don’t have to have rash  your right my daughter in laws cousin found out few months ago know rashes just really fatigue, sleeping lots barley eating feel so bad for her . I’m so sorry your daughter also sick god bless u both . Let us know plz about how u guys are hope they get to the sources. Can they give you medication for the inflammation ? So he wants you to wait ? Tell him you have know time to wait these dr are rediculious you have to be on death row before tvegetvto sources so sad .
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