ALS? bulbar?lower motor?

[Sukhre]

I have had pin and prick and insect crawling symptoms a couple of years back. I have had difficulty swallowing a few years and burping and chest pain. My right side of the body feel weak have chest (specially on the right).. have attributed them in GERD/gastro type of problem for years (feels like burping), also choking like feelings. There is a feeling on my leg muscle that feels like they are healing/moving(like blood flowing there). I also have numbness at right hand. Yesterday I saw what seems to be twitching on my arm (could be wrong). My voice became lowers. People commented my voice to be too soft (I guess its not nasal yet).

ER: Most doctors ignored me until an ER doctor draw a line with a sharp instrument below my feet and it felt like an electric shock and I told him that. He sent me to neuro.

FIRST NEURO VISIT
Neurologist on the first visit said, "If you do an MRI your worries would go away".

MRI BRAIN:
My MRI on brain has lesions (which clears out MS, and some other things not ALS). It has few T2/FLAIR intensities on white subcortical regions and also have some in corona radiata region (motor).

MORE NEURO VISIT:
On the second visit he said "I am worried about your memory and MRI"
On the third visit he asked me to do test on dementia, cervical MRI and come back for spinal tap. He was worried.

My reflexes are good. Which means it cannot be lower motor disease yet?

Cervical MRI
They found some nerve-pinching on the Cervical MRI, I was thinking that was it and had scheduled appointments with neuro/spine surgeons.

NEUROLOGIST
neurologist emailed me my Cervical findings would not cause that many issues (mostly compensated, meaning not cause much nerve issues).


I emailed back to the neurologist "are you suspecting ALS?" He did not respond.

I didnt have EMG/NVC type of tests. His change of behaviors (worries and becoming super kind after the first visit) after the first visit worries me.

I ve done all kinds of blood tests, visited fibromyalgia experts and did thyroid/other hormone tests.


Does it sound like ALS? Bulbar? Did anyone have lesions in MRI as a findings for ALS?

 

[affected]

As I'm not a doctor I don't know what is causing your issues, but it sounds nothing at all like ALS and your neurologist doesn't seem to be heading in that direction with the testing so far.

You need to keep asking the questions there and keeping an open mind on the fact that there are so many other things this could be and ALS has not been put on the table for you.

What were the findings on the dementia testing?

 

[Sukhre]

I did not do well on some sections and the neuropsych guy asked "whether I read things? Or do brain exercises?" I am yet to get the official result.

 

[Vincent]

With most of your symptoms being sensory and the finding of brain lesions, I would say you decidedly do not have ALS. Visible lesions would point to something like MS, which also has sensory symptoms. Hope it helps.
Vincent

 

[ECpara]

I'm not a doctor, and a little confused. Lesions found on your MRI point AWAY from ALS but could be indicative of MS, not the other way around as you've stated. Also, none of your symptoms sound like onset of ALS, bulbar or otherwise.

 

[Vincent]

Having a vested interest in all the testing I received over the past several years I'm pretty sure lesions are not found in ALS. MS being a demyelenating disease the scarring this causes show up on MRI.
Vincent

 

[Sukhre]

My lesions are not MS (in MS demyelition signs are there which is not in MRI). I did a search and it shows some people shows lesions. Also T2/FLAIR lesions are sometimes inflammations that might even go away or point to old (supply of blood to brain related) scar.

What complicates in some cases that people also have spinal cord issue which I have (which creates sensory issues). My neuro does not believe the spinal cord issues are not my main issue (He is not telling me what else he thinks. )

These things worries me the most
1. Eating and swallowing difficulty.
2. Fatigue
3. I used to dance salsa. My pain point from salsa ( over back side of ankle) does not go away or heal.
4. Difficulty remembering.

I have a few sensory related issues which may or may not come from my spinal cord issues. May be people with spinal cord issues worsens them with MNDs (muscles give in and then spine looses support and the nerves get more squeezed?)

Can Eating or swallowing difficulty be the first signs or bulbar? Or it always have to be nasal voice.

I do not think my neuro would be seeing me every month if he did not think I have a serious disease. I know MS is ruled out and all my searches with my symptoms have ALS as a possibility.

 

[Sukhre]

I meant some people show lesions in ALS.

 

[Sukhre]

From what I understand an ER doctor once draw a line on the back of my foot (planter?) . It felt like an electric shock going up. Is that positive babinski test?

 

[Nikki J]

No babinski has nothing to do with what you feel or do not feel. You need to talk frankly with your doctor. If you have monthly meetings you have plenty of opportunity. You are using search engines and guessing. There is no need and no point to it if you have a neurologist. It does not sound like ALS to us your doctor has apparently not said ALS to you Until you have something more concrete to make ALS a possibility you are only scaring yourself

 

[affected]

I agree with Nikki here - you need to go back to your neurologist and sort it there.

Your constant internet research is making you feel like you are learning all these things, but it's sounding like a bunch of trash really. We have given our opinion about the one thing we know really well and I still say your stuff sounds nothing like ALS.

Please read our sticky again, that is our official position, we don't get talked around it.

Lastly please remember the people here are dying or caring for those dying and some expend enormous effort to type here. Read that sticky, then realise you have asked and we have answered. That's all we can do here.

I truly hope your doctor sorts things out with you soon.

 

[Sukhre]

I am sorry to bother you. It does not look like I have ALS. I have Cervical stenosis.

 

[gooseberry]

Which is one of the main differentials and can be helped with surgery/meds. Good luck and congratulations!