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dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
Hello all once again,

I’m like the college student who never writes unless they need money. Well, I don’t need money, I need help.

My ability to eat regular food has declined rapidly. I’m now on strictly pureed foods and smoothies. Water with ThickIt. Everything out of a straw. Pureed foods with a spoon. The biggest problem that created the need to change is food getting stuck in my esophagus.

But my mouth has developed this horrible sticky, gummy coating that I can’t get rid of. It makes eating anything almost impossible because the food coats my mouth and its hard to swallow it. My tongue doesn’t move food around well, so it gets coated to my lips and even my teeth. It’s the biggest roadblock to getting the nutrition I need right now. My gums are even effected, swelling and tearing.

Whats causing it and how can I fix it?

Thanks for being there for me.

Deb
 
First thought is thrush/yeast infection. Particularly if you have taken antibiotics recently.

Next thought is a nutritional deficiency of some sort- either because you are not able to take in the correct nutrition due to changes in eating or because something else is going on with your metabolism.

When you mentioned it in your other thread, it sounded more like a dry mouth issue, but with more description here, it sounds pretty serious.

Have you visited a dentist or doctor to see what they think? It sounds like it's quite serious in that it is affecting your comfort. Mouth issues can affect whole body health and comfort. I hope you can track down the cause soon.
 
Agreed, Deb, get it checked out!

Best,
Laurie
 
by whom? Just saw the dentist 2 weeks ago. Their suggest to swollen gums was salt water rinses. Just saw my PCP - no idea. Is this something to discuss as part of the swallow test - or UoM ER serious? You're right, Fiona, it is seriously affecting my life and ability to eat.
 
So this happened to my husband at one point too. At first they thought it was thrush, but the treatment did very little. His mouth was also very painful and would bleed. We tried lots of things, including 'magic mouthwash' and a cycle of steroids before it became clear that it was some sort of systemic infection. A strong antibiotic helped tremendously. I am sorry that I don't remember the name of the specific infection or antibiotic. We never ended up at the ER, but he got increasingly uncomfortable until the antibiotic. Keep us posted--this disease is a little bit of experimentation for everyone, I think.
Tracy
 
Deb, I would recommend someone in the dentistry/medical field who might be familiar with people who have immune compromised health conditions. Your gp or regular dentist may not have the same kind of approach or understanding that someone who has treated secondary and tertiary issues arising from chronic and complex diseases. I'm not sure if you have a regular ALS clinic you attend, but I would think they might be a good resource for providing a referral in this case. Having a firmly entrenched bacterial or yeast infection has the risk of spreading elsewhere if you have an already stressed immune system.
 
Tracy, what Doctor did you see for the problem? Was this your PCP? ENT? Or? Did the antibiotic cure the problem. Did he have any other symptoms? One would think that a systemic infection would show up other ways?
 
Fiona, the only thing the ALS clinic is pushing for is a swallow study - to the extent of going thru the ER to have it done. The clinic is booked thru Aug for SLP swallow studies, they tell me. I really don't want to be hospitalized, but if I can't find a medical professional to help, I might not have any choice.
 
Oh boy, that sounds really stressful. I am so sorry. I can totally understand not wanting to go the ER route.
 
I forgot to mention - I have lost the ability to speak. I communicate the basics with a free app on my phone. I'm scared to go to the hospital. How can I communicate my needs?
 
It was our PCP who finally figured it out--he tried several things but finally decided to treat it as a systemic infection and it did, indeed, fix the issue. He wasn't having any other issues at the time that we were able to connect. We had discussed this with our ALS clinic doc but he didn't have anything else to offer. Best of luck!! Hope you are able to address the issue quickly!
Tracy
 
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