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CB1977

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Hello everyone-

It has been a while since I last posted. I have been playing the waiting game, waiting to go back to my neuro and also to another specialist at Cleveland Clinic. In the last 6 weeks or so, I have had another strange symptom.

My cheeks on the inside of my mouth seemed to be swollen. Upon further self examination, it actually seems that they are caving in on the sides? It looks and feels different. It has been gradual over a 5 week period but is certainly a change. It is causing me to bite them often. I still have all of the symptoms that I have had since June as well.

I cant find anything about this on he internet, I dont even know how to search for it.

My questions are these-
-Could this be some type of atrophy? My cheeks dont look different on the outside as far as I can tell?

-If this is atrophy....are there neuro issues besides ALS that could cause tongue or mouth atrophy?

- Has anyone on this forum experienced this?

I have had a extensive workup by an autoimmune specialist and been to a neuro. I have a follow up with my neuro on the 15th of Dec and an appt with Cleveland Clinic on Jan 6th. Thank-you and have a happy thanksgiving!

CB in Ohio
 

rose

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CB, yes, I told my doctors I felt like my mouth was caving in on the inside... I actually had taken a picture for the lip atrophy album on my profile page, but deleted it recently, as its really hard to tell from the photo what I was pointing out. Inside my mouth, my cheeks are scalloped out to the shape of my teeth, just like my tongue and lower lip is.

At first I thought I'd broken off part of a tooth, and my cheek was going in there, and I was biting it because of that... then, (this was over a year ago) my rheumatologist kept asking me if I had mouth ulcers, so I was checking in there for that, and would see a few, occasionally, or little cuts from my teeth, mainly the cuts are on my lower lip though.

I finally figured out I was biting my cheeks so often, because they were in the way of my teeth. I think I've lost more bulk in there now, so its flatter in there and it does not happen nearly as often, although my lower lip still gets bit on a regular basis.


I was just wondering how you were, and then here you are posting. :)
 

awieleba

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CB~

I just said to my neuro at last vist that i felt like my cheeks were caving in. I have the teeth imprints as well on the inside of my mouth. But, I have noted that my face is less full. I feel like my Ilost muscle in my face. WHen I look at a photo from 2 yrs ago, MY face looks so much healthier and plump. I dont bite my cheeks but I have the imprint. I do bite the upper front part of the inside lip though.'FYI, I was looking for ulcers too, because rheumy asked and I do get them.

Good luck CB!
 

CB1977

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Rose and April- Thank-you for the response. Do you know if this is a typical ALS symptom or could something else cause this? I certainly have something going on there, and it seems to be progressing quickly. Thanks

CB in Ohio
 

CB1977

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Hey Rose and April- Was this a very gradual thing for you or was it a quick progression of the symptom?

For me, I noticed it probably 6 weeks ago (but didnt think anything of it) and noticed it again this week because it is getting bad (to the point where i am biting my cheek all the time). I am hoping that this can be caused by a neuropathy or something. My face also feels weird sometimes...stiff.

CB in Ohio
 

rose

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It was gradual, I'd been biting my cheek for weeks, probably more like months.

I really thought it was because I'd broken part of an upper molar off and the cheek was going in the gap ~ which it was. I didn't really catch on for a long while. It was more like a nagging irritation that on top of everything else, I was going to have to get to the dentist and get the tooth fixed. It wasn't until that I stopped biting that particular place, but had begun to bite other areas, and was looking in there because of my rheumatologist's questions about ulcers, etc, that I caught it.

No, I do not think this is a typical symptom of ALS. In fact, the last time I was with my speech pathologists I'd asked them if they had any ideas about how to help with biting my lower lip so frequently, and they pretty well said that this wasn't something they saw very often.

I can tell you that my neurologist at Hopkins says that this, along with the dry eye (which I remember you have) is most likely central 7th nerve related. This is not the same as the 7th cranial nerve in the bulbar region of the brain stem, meaning not lower motor. Its always better for it not to be LMN.
 

CB1977

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Rose - That is interesting, thanks for the information. Hopefully my second EMG that I have in Dec will shed some light on this. I feel that I am close to a diagnosed of something. Happy Thanksgiving.

CB in Ohio

Go Browns :)
 

awieleba

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HI Rose and CB

I had that stiff feeling in my face in the spring. IT was awful, I Felt like my face was gonna cramp but never did. It was on the right side and my weak side is my left.

I noted something different when I rested my hand on my face like you do at the computer and it felt thinner.I did not think much of it. I did not really think anything was wrong with my inside cheeks untill I saw Rose's photo, and I was like, that is what mine look like. I would have never thought that the teeth marks were atrophy. I do have that slight scallop tongue thing on one side, not even of anything to concern my nureo as a diagnosed. SOOOO, long answer would be that I dont know if it was gradual or not. It is just the way my mouth feels.

Rose, you are so helpfull.
 

olly

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cb

yes i have had ulsers and bite my tounge and cheeks.
my symptoms started in my legs and progressed upto bulbar symptoms about 2yrs ago.
from the start of this year i have had fassics,spasms inmy lower facial muscles also jaw siffness and chewing problems.
i lost alot of wieght due to these problems but i do have muscle loss in my lower face and it is very sunken,especially you can see a difference in my left side it is hollowed out.
i had mainly jaw fassics and severe spasms on my right side so i dont understand this.
the spasms would be sustained and contort my mouth.
recently i have had more fassics onmy left side now and praying i dont get the spasms there.
inside of my cheeks feel like yours do.
also when i looked on roses atrophy pics i found that i have the indentations in my cheeks and the little tags she pointed out,but i did not like to say anything at the time.
sometimes when talking my lower jaw drops or my chin area,it then sounds like i am trying to talk with ill fitting dentures in.
 

CB1977

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Hey caroline- Do you have a diagnosed? Thanks for the response.
 
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