Very scared and concerned.

[Flynlow]

Hello, I have been on here awhile and hated to post but as I feel I’m progressing faster i figured I should post my symptoms .
First im male 43 years old always been fairly healthy . About six months ago I noticed my left foot pinky toe was turning in and the foot pad seemed to be thin causing me to wear sandals in the house . Then a few months later my right foot started the same thing I still can walk on my tip toes and heels but my legs feel extremely heavy . About two months ago I started with twitching in my legs and a constant extreme buzzing in my feet.
Now my fingers feel strange and thick along with buzzing in my jaws that has lead to lip twitching and eye lid twitching when closed . My swallowing seems very weak and throat seems to feel and look like it’s sunken and tonsils are not as visible as before. My mouth is extremely dry at night and
I feel as though every day I’m slipping especially the mornings I wake up and sometimes I have tremors with buzzing in my head and brain fog .

So I went to the er and had mri and ct only nominal findings they just blew me off until my blood work showed high wbc low vit d , low potassium and extremely high vitamin b ? No liver damage or signs of cancer though . Now I’m waiting to see a neurologist but it’s months away but I am trying to get a emg done sooner . I’m sorry In advance if I have bad punctuation or did anything wrong I don’t mean to take your time away for non sense but I’m very scared as each morning it seems worse .
Thanks again in advance for any advice or help and I’m sorry for my poor texting skills .

 

[lgelb]

Especially given your lab results, I would see an internist to rule out systemic disease. But this doesn't sound like ALS at all.

 

[Flynlow]

Thank you for replying I appreciate your reply so much more than you know .

 

[Flynlow]

Well I had my emg and ncs done . The Dr wouldn’t do my face or tongue he assured me that since I had no slurred speech or tongue no atrophy just that I had no bulbar . He then said if you do I’ll find it with these tests because it will show .
I kept asking to check my face and tongue. But He said he didn’t want to put me through that . But of course with my my symptoms and issues and with him not checking my tongue and face it has left doubt about the result in mind .

I truly want to be happy for the result but I feel like my throat and facial weakness with lips are getting worse by the day along with breathing and tightness in my throat especially when I stand up . Again thank you for any and all suggestions . I have attached my emg reports if anyone would like to look them over .
Thank you for your time .

 

[Nikki J]

Wow that was an extensive emg and textbook normal.

You complained of symptom in your feet and hands. The relevant muscles were thoroughly tested. Even without that it is certainly true that people with bulbar als usually show emg signs elsewhere. So you were tested in symptomatic areas. You did not exhibit bulbar signs on exam. You have not reported symptoms that sound like ALS anyway. You need to look elsewhere for answers as Laurie told you

 

[Flynlow]

Thank you I just figured I would post my results . He said he was going to give me a very thorough look over . I appreciate your time . Thank you .

 

[Nikki J]

And we appreciate you sharing the results. Just sad you are still worried

 

[lgelb]

That’s an exceptionally comprehensive EMG as Nikki noted. So I can wholeheartedly stand behind my original suggestion. Take this result with the joy it deserves.

 

[Flynlow]

I finally was able to get in with an internal medicine Dr . He has done a lot of tests but so far only elevated wbc and glucose. My swallowing has gotten horrible since my last post only with liquid though it goes down but I get a tightness after. Also I feel like my throat has gotten significantly smaller in the back . I did do a pulmonary fvc test it was good and they had me do some grip tests that I passed . But my right hand especially finger and thumb feel weak and I have significant brain fog and weakness. Dry mouth and I’m not sweating much . My lips burn like crazy at times as well. I have an appointment with a neurologist next month so hopefully I can figure this out .

 

[lgelb]

See an ENT about your throat? There can be growths/infections/irritations that are very fixable.