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Kimsayty

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I’m 34 and having a rough time with bulbar symptoms for a few months now. I have a hard time clearing my throat and have to double swallow water and even food sometimes to get it down. Food gets stuck in my cheeks when I eat- not everything but foods like nuts, crunchy chocolate. My neurologist says the food is getting stuck between my cheeks and neck flexors. My saliva sits in the back of my throat or feels like it does and I just can’t clear it. I cough sometimes after water. My tongue often is thick or feels stiff and I articulate words wrong at times. I’ve posted here in the past but honestly could not remember what my username was.

My neurologist was leaning toward Mg bc I also have ptosis. Now I was given Ivig and I’m four days out without any improvement and actually feel somewhat worse as in weaker. The worst part is I’ve noticed what appears to be atrophy in my cheeks and neck. I also lost a bunch of weight over the last 8 months without trying. I’m petite as it is. I’m worried of course because I really thought I had MG and I have three little kids that need their mama. Als has always been in the back of my mind since these symptoms appeared but now I’m starting to think it may actually be als. It has progressed since this all started. Also- My grandmother died of bulbar als in her 50s.

I have had a few emgs which were “clean” but I just don’t know if they were all that thorough, they were performed quickly. I see my neurologist again on July 25.

Any thoughts on all of this? Does this look like atrophy? Seem like als? Obviously I’m following up soon regardless.
 
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affected

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Have you been assessed by a speech pathologist? That may be the next step when you see your neuro.
Clean EMG's point to it being something else, no matter how quickly they are done.
If your grandmother had ALS (I'm so sorry to hear that), but your parent between her and you does not, it is not really an indicator of anything. ALS does not skip generations.
So, all that to say there is still hope of it being other things, and I hope for you it proves to be one of the far more common things that could be going on.
Remember you can't diagnose atrophy, so just step back a little, enjoy your kids, you won't get this time back with them no matter what comes next.
Let us know what the next lot of exams and tests indicate and what your neurologist is thinking is gong on.
 

lgelb

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I removed your photos because they can be distressing and are not going to shed light.

A "few EMGs" that were "clean" and your neurologist is "leaning" toward MG? EMG and serology are both important to the diagnosis, with other tests possible depending on what is found. So my first call would be to another neuro for a second opinion, from what you report. IVIg is not necessarily going to reach full effect in four days, but it's not usually the first line approach to MG, either, and there are specific screenings such as for thymoma that are carried out as part of the diagnostic sequence, that you did not mention.

So I can't really make sense of what you're saying, but it doesn't sound like ALS. Again, I would get a second opinion (plenty of academic center options in NJ/NY) as for any life-changing condition.

Best,
Laurie
 

Kimsayty

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Thank you affected and Igelb. I haven’t seen a speech therapist yet, other than at my swallow study which was a few months back. That’s where they found out about exactly what swallow issues I was having. I do feel they are slightly worse now, but not remarkably so. I do hope and pray this is something else, but your right about enjoying this time with my babies. I am doing that as much as possible.

Yes, I had two limb emgs and one that was done in May on my right arm, one needle in my trapezius and one needle in the right side on my neck. The RNS did show some decretment in my neck, but not what is usually the typical kind seen in Mg. He did say he still thought MG. At that time, I didn’t notice atrophy, I am just starting to see those changes now. They may have been there but I didn’t notice or put together why my face was looking different. I did have bloods done and they were all negative, so he is saying possible seronegative. I had an initial response to mestinon which opened up my eyes and gave me some energy but never improved swallowing and faded after a few weeks. I did have an X-ray to look for thymoma I don’t have one. And thanks for deleting the pictures, I regretted posting them pretty quickly after I did.

I agree on a second opinion, it just takes months usually to get in. I’m going to see my current neurologist again July 25 and express my concerns while waiting. Hopefully whatever it is I have some years ahead of me to enjoy my children. That’s all I really care about it. Thanks again.
 

Kimsayty

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I got a second opinion appointment with an ALS specialist- Dr Matthew Harms at Columbia next week. I’m nervous but glad they offered me an appointment so quickly. Either way have to get to the bottom of things. Hoping for the best.
 

lgelb

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Good to hear -- let us know how it goes.
 
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