I'm Worried About My Symptoms

[Hoagie]

Hi all!

Thank for the creation of this thread. I've been lurking for a while, but have a few concerns now...

A few years back I would notice fasciculations on my calves when getting home from work. I thought little of them at the time.

Fast forward 2016. I was bit by a tick a contracted lyme. Was on 10 days of antibiotics and thought that was that. A few months later I started getting migraines very frequently. My eyesight went bad. And joints started hurting. Then, a year after the bite, my walking got really bad. I went to a neurologist and got a positive test result for lyme. I started treating. During treatment my fasciculations went crazy on my calves and feet. And all my symptoms actually got worse. I went and saw a popular lyme doctor in DC late last year. He mentioned that I had slight clinical weakness in my right foot and my tongue deviated to the left. He mentioned lmn involvement.

Well, I researched this and got scared to death. I forgot to mention that I had an mri done a couple months before going to DC. They found an active lesion in the midbrain/pons area of my brain. The neuro believes this what's causing my walking issues. However, just recently I've been starting to notice slurring, and fasciculations have become widespread, but mostly in my calves and left foot... they are almost 24/7. But really kick in after activity.

I recently had a nerve conduction test and emg on my arms due to ulnar nerve issues. The emg showed neuropathy. But the neuro also noticed hyporeflexia in all my limbs. I also have core weakness. But have had that since last year when this all began.

So, what worries me are all the motor neuron symptoms. Fasciculations, weakness, speech issues, tongue deviation, hyporeflexia... I m really scared the lyme has triggered als.

Until a recent search, I assumed hyperreflexia was more common in Als. But am now seeing hyporeflexia is as well. It's all so upsetting.

I have an appointment with a very good neuro at Duke Monday. Hopefully I get some hopeful news.

 

[KimT]

Best wishes for your visit at Duke. Please let us know what your neuro says.

 

[ShiftKicker]

Mod note, past posts here: https://www.alsforums.com/forum/do-...n-inflamed-brainstem-lesion-rule-out-als.html

Good luck at your appointment. I'd bring a written list of questions to ask to make sure all the things you've asked here get answered by a person who is providing your exam and reviewing your medical history.

 

[Hoagie]

Thank you. I will get back with you after the visit.

Is it possible for brainstem lesions to cause lower motor neuron symptoms?

 

[ShiftKicker]

Again, ask the doctor "What can be causing this?" and they can provide you with information specific to your condition based on their in-person clinical exam and review of your records and results.

 

[Hoagie]

I had my neuro appointment this morning. My neuro gave me a very thorough exam. She was not concerned with the small deviation of my tongue. She said my strength was good everywhere. Funny thing is when I got me EMG z few weeks ago, that neuro said I had 1+ relaxes. Today I had 3+. She said I fell in the brisk but normal range. She believes, at this point, that my walking and balance issues have to do with the inflammation surrounding a lesion in my pons. I pointed out the fasciculations, and since I have had them for several years with no atrophy or weakness, she is not concerned it. This and the clean emg, she says it doesn't look like als and is going to have some radiologists look closer to compare an mri from last year and one from a couple months ago.

 

[lgelb]

Sounds like a good plan -- thanks for the update.