Searching for an answer

[Annag13]

Hello everyone. I am here because I am worried about a diagnosis of ALS. I have recently been down a long road of finding out what is "wrong" with me. I am a 25 year old female and things started for me about 1 year ago. I started having very bad headaches and I eventually was scheduled for an MRI. The MRI revealed a few hyper intensities to my white matter, as well as a lesion on my grey matter (thalamus and cerebral peduncle). The appearance initially looked like MS (at this time, my only symptom was headache) so a spinal tap was performed which revealed O-Bands (consistent with MS). But when I had my 4 month follow up MRI, the leaions had become bigger, and there was a concern that I had a rare brain cancer called gliomatosis cerebri. An open brain biopsy was performed and much to everyone's surprise, the biopsy was negative. So, I am back to my original diagnosis of "possible MS". While it is safe to say I have some health anxiety, I am also a nurse and I am constantly checking myself for new symptoms and doing Internet research even though I know this is a no-no. Anyway, for the past few days, I feel that I have some decreased dexterity, primarily in my dominant right hand. The decreased dexterity is mostly limited to my pinky, as I feel it appears more curled up than my other fingers and seems to be somewhat floppy. When I focus on my pinky during tasks, I find that it just kind of hangs there and that it feels weak, almost as if it is not communicating with my brain. I was wondering if this is plausible for a first symptom of ALS? I have seen so many specialists (not due to the pinky) and none of them have ever mentioned ALS as a possible diagnosis in accordance to my MRI. Can anyone shed a little insight? Thanks.

 

[Nikki J]

I see no reason to worry that this is ALS. Your MRI findings are not indicative of ALS. Standard MRI in ALS is normal. We have MRIs to rule out other things ( like MS and brain tumor)
Talk to your doctors but sounds to me like it is consistent with your possible MS diagnosis. While MS is a difficult disease there are good treatments now so in our rather bizarre world we consider you extremely lucky!
Please don't waste your time pursuing this and do talk to your doctors

 

[Annag13]

Thank you.

 

[Annag13]

Anyone else have any insight?

 

[lgelb]

Your hx, age and findings to date are not at all suggestive of ALS. Pinkies are naturally more numb and floppy since we usually only use them for keyboarding. As Nikki mentioned, we have made considerably more progress in slowing MS than ALS but since your presentation is somewhat unusual, you might consider a second opinion at another MS center.

Best,
Laurie

 

[Annie's Phil]

I think Nikki has it right.

Regarding your pinky, instead of subjectively evaluating it with such descriptions as - "I feel it appears more curled up than my other fingers and seems to be somewhat floppy." - I'd suggest doing some actual strength tests using your other pinky as a control. Try lifting a weight, both in flexion and extension, with your control pinky and see if you can lift the same weight with your "appears floppy" pinky. Many folks describe a sense of perceived weakness, but when the muscles are objectively tested they reveal no objective weakness. I'm sure you know that when one focuses on their own body fearing a certain disease that they can often "perceive what they fear."

Like Nikki, I'm confident that you can take ALS off of your worry list.

I truly wish you well.

 

[Atsugi]

I had to laugh when the poster read Nikki's response and then asked for more opinions.

Once Nikki has given her opinion, you've gotten the most authoritative opinion in the world.

 

[Nikki J]

Thanks Mike but hardly true! Miles and miles from it. You could argue that my Neurologist's opinion is the most authoritative in the world but even though I listen to every word she says I do not speak for her! But I think we all agree the OP's answers lie elsewhere fortunately for her