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Q. Are swollen tongue, mouth sores, and declining eGFR signs of AL amyloidosis?

Answered by
Dr. Sandeep Shrestha
and medically reviewed by Dr. Sneha Kannan
This is a premium question & answer published on Sep 18, 2020

For the last month, I have had a swollen tongue with teeth marks, tiny blood blisters on my inner cheeks, countless canker sores, and now even lumps on my uvula. My labs are normal (no sign of infection or illness, no abnormalities with WBC, platelets, etc), no one else in my home is sick, I have no cold symptoms or sore throat - just pain from the lesions. The only potentially off labs are kidney related (leukocytes in urine with zero infection, some proteininura, and declining eGFR currently at 59).

Dr. Sandeep Shrestha

Otolaryngology (E.N.T)
#

Hello, Welcome to icliniq,

As per your concerns, there is tiny papillomatous lesion over uvula, you don’t have to worry for now as your report are normal. One one most common lesion for having multiple lesion over the oral cavity is nutrition deficiency.

I would advise you to take

1) Tab vitamin complex 1 Tab po od for 1 months

2)Do gargle with betadine 1% 10ml mixed with 10ml warm water for 7 days

Hope this will help you

Thank you


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Thank you! I'm looking that up now - is the betadine the same as providone iodine? And what kind of Vitamin Complex? My PCP has referred me to oncology/hematology to evaluate for AL Amyloidosis. Is that overly cautious do you think? I have a history of chronic pain, and now with the sudden kidney issues and mouth issues, particularly the teeth marks with my tongue.

The sores seem to be rapidly spreading and I have a ton behind my bottom teeth now. All of this started tonight. It originally happened three months back. And then went away until about 2 weeks ago - and then cleared up a bit and is back rapidly with a vengeance.

Dr. Sandeep Shrestha

Otolaryngology (E.N.T)
#

Hello,

As per your concern,

Yes providine iodine is same as betadine.

You can visit oncology , as it is always good to be cautious. Vitamin complex including B1-B12 with zinc and vitamin A,C,D,E

Hope using this will make you feel better. Thank you I wanted to know about your kindey problem.

Do you have any reports. Thank you


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So the only thing I have is labwork that shows a significant decline in my eGFR. I've attached the numbers for your review, including Creatinine. I am awaiting results on a 24 hour urine test. My mom has Stage 3A CKD. I have also included a summary of my health problems in case there is relevancy that you see that other doctors have not. My recent abdominal CT was normal.

Summary

Dr. Sandeep Shrestha

Otolaryngology (E.N.T)
#

Hello,

As I have gone through all of you past medical condition. I have a few questions :

1)Are you under any medication for low eGFR? As per your report it slowing decrease function of your kidney

2)How often do you take alcohol ?

3)Do you smoke?

4) How much do you used to drink water in past?

As you have suffer from a different diseases in past you need to caution of your diet and nutrition. Hoping for your answers Thank you


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I am not taking any medications and can't see the nephrologist until next month. The type of renal insufficiency I have is immune related, like my mom's. Not diabetes or high blood pressure. I only drink occasionally, maybe 2 glasses of wine per week at most. I do not smoke. I didn't used to drink a lot of water, but I drink a ton now. I have Ehlers Danlos Syndrome Type 3, and was diagnosed with lupus 11 years back, but due to more recent ANA labs, that diagnosis was said to be wrong and the chronic pain all related to EDS.

Oh and I have mild POTS, and severe orthostatic hypotension. So I take a lot of sodium to stabilize my blood pressure drops.

Dr. Sandeep Shrestha

Otolaryngology (E.N.T)
#

Hello,

As youR kidney function is decreasing too much water and sodium is not good for the kidney. Hope you will get to meet nephrology soon.

As your having EDS try avoid strenuous work and avoid injury and do follow cardiologist for echocardiogram. For your oral lesion do take gargle and start vitamins.

Hope you will get well soon Thank you


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Wonderful, thank you so much for your help!
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