Fasics, leg weakness, new leg muscle wasting, 9 months constant from flu vaccine, scared for ALS

[caribwmndance]

I am a 42 year old mother of 2.
I have read the preliminary posts the moderator suggested.
I received my Flu vaccine last Oct, 2022. A week later started having, tremors, Weakness, back pain. 9 months later I still have tremors, left leg weakness, cramping in my left foot and hand, and over the last few weeks, my left quadriceps muscle has started to disappear. I'm starting to have trouble with mobility.
I've seen 16 different docs. It was a 6 month wait for neuro so I've just seen one. Actually, this is my second one. The first one told me to see if drinking wine helped my tremors. !!!
They ordered a cervical MRI. They did note some hyperreflexia in that leg but she didn't even look at the muscle itself.
My questions for this forum is,
Did anyone diagnosed know that a virus or a vaccine triggered their symptoms?
Does anyone diagnosed have a path similar to this one?
9 Months of my body betraying me, many months of doctors dismissing me saying I'm too young and healthy, Ive started to turn elsewhere for answers. Thank you in advance for your input.

 

[Nikki J]

Post viral syndromes often bring people here but they don’t have ALS. They eventually seem to get better but it can take months to over a year. I can only recall one person complaining of flu vaccine side effects several years ago. Of course coincidence happens as well so correlation is not always causation

You don’t mention any tests or if the clinical exam confirmed clinical weakness or if your weakness is perceived.

 

[caribwmndance]

I have confirmed weakness and muscle wasting in my left leg. And now it's spreading to my left hand and arm. I've had my entire spine imaged with no abnormalities, an EMG last week that "could not rule out or rule in ALS" per the neurologist. More labs and imaging ordered. It seems I will be in limbo until I progress enough that they just diagnosis me with ALS. It's a diagnosis by exclusion, right? As my symptoms progress every week, I'm just waiting for it.

 

[Nikki J]

ALS is diagnosed when you have a diagnostic emg , a clinical exam consistent with emg and then mimics are excluded this includes mris but also extensive blood work some of it for fairly obscure conditions

I don’t know where you are on the spectrum of exclusion nor how suspicious your emg is. If you want to share it ( charts and summary) block identifying information first

If ALS is seriously on the table you need to be seeing an ALS specialist at an academic medical center. In your place I would be going to mgh. Dartmouth would also be a possibility with mgh as a second opinion should you get diagnosed

Sometimes people linger in a true limbo. Sometimes it turns out to be something else. Sometimes it goes away. Sadly sometimes people get diagnosed

 

[lgelb]

As Nikki said, if you want to post the EMG report with your details blacked out, we might be more helpful. A year in, an equivocal EMG indeed would seem to merit a second opinion at a major center.

It seems very unlikely that the flu vaccine could cause the range of progressive issues over the timespan you report. But what I'd focus on is the extent to which you have something treatable. ALS is low on the list of possibilities from what you've said.

Was your spine imaged?