Update - Mayo

[miss91]

So - spent the last 2 days at Mayo. Many blood tests were done, as well as emg/nc tests and clinicals.
First day, dr. said my reflexes were all normal, maybe even a little reduced in the arms. Not hyper at all. He couldn't see any big atrophy differences.
Yesterday's Emg was done on my right side (where I have issues)....even my jaw muscle, as well as my neck, arm, upper/lower leg, and then right into the inside part of my foot where it hurts and i feel it is atrophied (not under the foot).
I had to ask her (EMG doc) how it looked preliminarily. She said it looked totally normal, nothing out of the sort. Nothing ALS-related. This was shocking to me, as the toes are so skinny now as well at the top of the foot, and the inside is sooo sore. She said i could discuss it more with my neuro.
So, my Mayo neuro met with me at the end of the day yesterday and we went over some things. Not all blood tests were in, but he said the ones in were all normal, the rheumy ones, inflammatory ones, etc. He said the Ck (creatine?) one came back on the low side of normal. He said many times these levels are elevated in ALS and mine was only 32.
He said my oxygen sleep study test came back very normal.
He said the most important test - EMG - was very normal. He said sometimes emg's come back 'iffy' or inconclusive, but mine was very good. Didn't even pick up a fascic. I asked how could that be possible when they are so strong and constant? He said in ALS one would've shown up somewhere. He does not doubt that I have them, but he does not think they are ALS-related.
I was told I need to be reassured I do not have Als, nor does the Mayo neuro think I have any motor neuron disease, nor do i need to be worried that it is very early and something could be missed.
OF COURSE I still have these fears, mainly because last night my thumb was moving on its own from bizarre twitchings, in addition to all the constant fascics. And mainly because my foot is so skinny and weak and hurting, and the back of my leg is so tight! My dr. said I need to see a podiatrist for the foot issue, because there is no indication it is nerve-related. So, tomorrow I will see a local podiatrist..... my mom was just here telling me that she had plantar fascicitis in one foot that was so horrible and has recovered from that, and the back of her leg was very painful as well.
So - just wanted to provide an update to anyone who was so kind to reply to my other posts in the past. I'm still a freak - and until I get a diagnosed as far as what's going on with my foot/leg - I can't help but still be a little scared. Just seems weird that I'd get crazy fascics and start seeing/feeling foot/leg problems shortly after.
Still, going to mayo and getting a 2nd good emg/reflex report is extremely great. I was hoping for some sort of treatable condition so i would know I'd feel like my old self again, but hey i will take this to start with.

 

[BethU]

Aside from the fact that you're still hurting, THAT IS GREAT ! FABULOUS !

It sounds like you are also zeroing in on the foot-pain problem, too!

It IS weird that you would get fascics and then foot pain, but just because something is weird doesn't mean it's ALS, as you have proved! There are a gazillion weird diseases/conditions our flesh is heir to, in addition to ALS.

Thank you for reporting back. I've used up my quota of exclamation points for today, but I think your message may help a lot of people, so I'll throw in another one!

 

[crystalkk]

That is great news!

 

[miss91]

Thanks guys! I am still scared because I should not have foot atrophy and pain with fascics - that is just weird. But you'd think the reflexes would be a little jumpy, or one of my 2 emg's done on the leg would've shown something - esp. at Mayo Clinic - and especially right into the naughty foot. I've read so many times on here "these things take time to show up", hopefully that is not true in my case.

 

[hopingforcure]

Well we called this just as it was. I hope the rest of you who are sure you have ALS and do not have brisk reflexes, clonus, spasicity, babinski, atrophy, you do not have ALS.
I can tell you all for sure that you would know if you have brisk reflexes, clonus, atrophy and the like. I am just a little over peole without weakness, brisk reflexes, clonus, and such feel ing like they have a MND. Miss you are not who I am talking about, it just is a good lesson for other people who are sure they have als. I hope they find what is wrong with you, and I am sure it will be treatable.

 

[awieleba]

good news!

Just hang in there and the thing that will reassure you is time, the longer time goes and your clinicals are good and emg or no changes. I was diagnosed with plantar fasc thing as well, my heels and feet would hurt and the back of my calf would feel tight. I still have it, my heels and calf were in pain today while cleaning. (granted I did clean for six hours, so maybe its normal). My feet will hurt all day and shrank, not calling it atrophy anymore but they are smaller and I can barley wear my beloved heels anymore. I force it some nights and I will pay the next day with twitches and pain, but this girl loves her shoes. I hope you get answers but it seems that there are a few people like us that have issue's but no diagnosed and seem to plateau. I will tell you at times over the last year and half I was sure that things were gettting worse, and when I went to my nuero they were not. So, hang in there and keep us posted.

blessings

april

 

[connieS]

Congrats!

Hi Miss91!

Congrats on the great news! :mrgreen: Am so happy for you! Do hope they'll be able to do something for you for the pain, but the fact that everything points away from ALS and your symptoms have not progressed is just simply wonderful!

Take some time off to enjoy!

 

[crystalkk]

Miss91,

Let us know how the appointment with the podiatrist goes....

 

[miss91]

Podiatrist says my bunion is causing it, but I don't think a bunion causes the bones in the top of the foot to stick out! Also my ankle/lower leg is smaller than it used to be. I'm trying to not be too freaked out, but I don't have a decent answer at this point. Called Mayo and they will be referring me to the podiatrist there.
I just don't think a foot should get all bony over a bunion~!

 

[BethU]

As far as I understand it, the bunion is formed by bones being displaced from their proper alignment, and they are very painful. It could be that when the bones around the big toe are forced out of position, other bones are also displaced. I'm sure the podiatrist evaluated your whole foot.

Isn't the bigger news that you've been cleared of ALS? And doctors know what is causing your foot pain? And also how to cure it, since bunions can be corrected with surgery, where they realign the bones back to the correct position? Whether we think a foot "should" or "should not" get bony because of a bunion is moot if the doctor tells you that is what is happening.

Sounds to me like you've been given a very "decent answer." I'll trade you ALS for bunions any day of the week! :lol:

Take care.

 

[Al]

No, I'll keep my ALS. At least I know what it is. The anguish of not knowing why a bunion is deforming your foot must be driving you crazy. I don't envy you.

AL.

My smart alec answer for the week.

 

[miss91]

You guys, you are very funny! I'm not complaining over a bunion! Goodness. If that's what it is and it's not related to atrophy - GREATT! I'm just concerned because it's getting harder to walk and the fascics are continuous. You kind of stressed my point; I wish the foot thing was as easy as a bunion (I know I am not the expert). It's kind of hard to believe a bunion could make your one shoe too big; but I'll leave it up to the experts. Jeez I wish the bunion was all I was worried about lol!