Considering additional MRI

[NekoiStar]

Hello, Joanna here,



Its been a while since I have posted but I wanted to ask the community a few questions in regards to my progression and some conflicting data I've received over the last year that has my doctors a bit at odds of what is going on with my diagnosis. I will be as succinct as possible, so please bear with me.


- Symptoms started 9/2021 during/post covid starting with swallowing issues
- Speech began to slow after 2nd covid infection on 2/2022
- Both arms/hands began to cramp and twitch in 3/2022
- Diagnosed 5/2022 with bulbar onset ALS via EMG and physical
- Swallow test showed dysfunction in upper palette on 5/2023
- Pulmonary tests showed significant decrease in overall lung function, bipap was recommend on 6/2022 I declined the device at that time
- Legs started to be affected around 11/2022
- Overall symptoms have worsened since 4/2023 after a month long chest infection including difficulties walking, talking, lifting arms, and hand dexterity


The main conflict comes with progressive improvements in both breathing and swallowing as my pulmonologist had originally advised a bipap, but every 3 months I was showing improved numbers each time up to my most recent ALS clinic this month, in which she could no longer prescribe me a device without a sleep study. Swallowing has also significantly improved to the point where the only issues are with tortilla chips in particular and recent swallow test shows no dysfunction.


I have also reported some other symptoms over the last year including:

- numbness in arms/hands
- pins and needles on scalp/face/neck/shoulders/back/chest/lower legs
- pain/dryness/blurred vision in both eyes, but occurs mostly in right eye
- bowel/urinary incontinence
- phantom smell, specifically cigarette smoke in a home with no smokers no neighbors close enough to be a source of it, and multiple instances of family being unable to confirm smell at the same time. This will last for a few days/weeks and seems to come right before worsening symptoms.
- at home with family and with my partner its been noted that there are times where I do have noticeably different capabilities in all areas of weakness, speech, and dexterity.


I however am a very pragmatic person and have been only seeing the decline and loss of function. I gave up on the idea of any other possibility after 2nd opinion and initial MRI in 2022 only showing some mild motor band sign and mild narrowing on the c6/7 cervical spine with bloodwork coming back negative for all other suspects.


My question is that my Neurologist has offered me another MRI, this time a complete spinal one as the last one done was only the brain and neck... Is this even worthwhile at this point?



Thank you for your time and thoughts on this matter.


- Jo

 

[Nikki J]

If your neurologist thinks it may show something then do it. It is non invasive. As long as you can lie flat for the scanner there isn’t a reason not to. Even if the chance it is something else is small you shouldn’t pass up a chance to find something treatable

 

[KimT]

I would do it. I hope your neuro orders it with contrast. If you have a co-morbidity, you might be able to treat it. My knee recently (Feb) gave out but, when it did, I had a ton of pain. There were findings on MRI.

Also, some of it might have been long Covid and that might account for your improved breathing numbers.

Did they do a complete workup for autoimmune diseases. MG comes to mind.

I'd definitely go through with the tests.