What causes the loss of mucus membrane?

Posted by learningstudent @learningstudent, May 3 7:48pm

Hi all, I am just wondering what causes losing all mucus membrane or sweating, saliva or any secretion? Recently I seem to lose oil on my face, do not sweat, dried mouth and dried skin and also lose all the snot and nasal mucus? No doctors could diagnose what is happening and that makes me scare and anxious.

I have Erosive Lichen Planus, It began with the soft tissue in my mouth stuffing off which has now affected all my soft tissues. The Mayo Clinic may be great for you. But before leaving your home turf in Seattle, why not check with a couple of the finest Health Centers in the USA. The University of Washington Hospital and clinics. If necessary they would refer you to the Fred Hutch of there is any cancer involve. With my elusive and progressive disease, I have found 2 things to be true. 1. Stress makes it worse so I exercise vigorously. 2. The University Hospitals have the more research available to you and are interested in having the tenacity to search and stick with you until they can diagnose and keep treating you as needed. I don't have personal experience with Mayo because I can only be seen in Rochester and I live on the West Coast. The costs can be prohibitive and those are things we all need to be aware of. I wish you good health. Over the last 35 years my best treatment and help have been at SFU and San Francisco and the University of Washington) Hospital clinic.

REPLY

Good morning @learningstudent . Sounds to me like you may have an autoimmune disease. They can be strange and difficult to diagnose. Mine took at least 8 months before I got a diagnosis. I agree with going to a major medical center or university medical center near you. I found this web site from the National rare diseases organization that discusses losing mucous membranes. Strangely enough, all autoimmune diseases come under rheumatologist. I wish you luck in quickly finding a diagnosis and treatment.
https://rarediseases.org/rare-diseases/mucous-membrane-pemphigoid/

REPLY
@learningstudent

Yes I will it it if they cannot diagnose. I am just wondering how much does it cost for diagnosis in Mayo Clinic? I went to see specialists in Swedish and cardiologist said my heart is fine. But the problem is my heart rhythm is fine but whenever I wake up from sleep I have heart palpitation and heart rate increases rapidly and sometimes up to 110 and then drops after several secs. This week I m seeing the ent specialist regarding my nose and I am just afraid that the specialist will not give me a diagnosis cuz some other specialists – lung doc or neurological doc cannot find out what happens.

Jump to this post

I suggest you read about panic attacks and how to stop them on the web. A paramedic explained it to me and I learned on my own to not have any more attacks, without going to the doctor. My older sister had them for years, would not follow instructions from the doctors, took the wrong medicine in the wrong way, and was told to not call the squad and go to the emergency room anymore. She continued this way for many years and lived to her late nineties, avoiding her family. If that is not the reason for the increased heart rate, at least you will be educated about the matter. Sometimes we can learn to be our own advocate for solving problems. I have a heart rhythm problem but the doctor said don't worry about it. That's no reassurance, so I work on diet and exercise because I am knowledgeable about the nutrition and I raise my own garden. If I have any serious problems in the night, my former paramedic son is available to check on me and calm me down. I don't need a doctor for everything anymore but I still read all I can about health. Dorisena

Liked by lioness

REPLY

Seeing specialists need referral but messaging the docs take a while to get back to u. My primary doc keeps saying anxiety causes all these, which is not true. I might be a little anxious about health due to undiagnosis but it is not anxiety that causes this. So I am so frustrated and decide to switch docs.

REPLY

Hi,
This is what I’m talking about. Too many run of the mill doctors have little to no experience with complex cases.
The sooner you get to a teaching university the better. Why not U of Wash. they have a medical school and clinic.
Try not to waste too much time. It’s your health.
Funcountess

REPLY

@learningstudent . I agree with funcountess YOU need to go to a teaching hospital to get a diagnosis the longer you put it of the worse it will be for you . So go to this University hospital if you cant get into Mayo . They are both researching hospitals that will find out your problem . Tell them about the yellow stools your having .

REPLY
@funcountess

Hi,
This is what I’m talking about. Too many run of the mill doctors have little to no experience with complex cases.
The sooner you get to a teaching university the better. Why not U of Wash. they have a medical school and clinic.
Try not to waste too much time. It’s your health.
Funcountess

Jump to this post

What “membrane”are you discussing? The BBB?

REPLY

At this moment they do not allow in person visit in uw. Would u guys give me a bit of specific details about how to deal with this? Like how to make the docs diagnose the problem? Get a primary doc there?

REPLY
@learningstudent

At this moment they do not allow in person visit in uw. Would u guys give me a bit of specific details about how to deal with this? Like how to make the docs diagnose the problem? Get a primary doc there?

Jump to this post

@learningstudent I think you might try calling a university medical center, say you are a new patient, and that you have some very unusual things going on with your body. See if you can get a virtual appointment in the rheumatology Clinic because you assume it’s autoimmune. Before you have the appointment, write down everything that you can think of that has happened in the past months (even if you don’t think they’re related to the mucous membranes. Have some photos that you can email the doctor if she wants them.

My husband had to do this for me when I got so sick 2 years ago. While I was hospitalized, he called the university med center and got us an appointment. They knew what I had and have been treating me ever since. Most local doctors have not seen or heard of all the immune diseases, so you really have to advocate for yourself.

Best of luck to you and please let me know what you do!

REPLY
@learningstudent

At this moment they do not allow in person visit in uw. Would u guys give me a bit of specific details about how to deal with this? Like how to make the docs diagnose the problem? Get a primary doc there?

Jump to this post

Hello @learningstudent,

@becsbuddy's advice about writing everything down before seeing a new specialist is very good. Here is some information from another Mayo Connect discussion on how to get off to the best start with a new specialist. If you read it I think it will help you to be better prepared to visit with a specialist.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Liked by lioness

REPLY

Thx u. But do we have to see the primary doc first? There are a lot of clinics that belong to uw medical center. Do they still belong to us. I have an app with doc in northgate.

REPLY
@learningstudent

Thx u. But do we have to see the primary doc first? There are a lot of clinics that belong to uw medical center. Do they still belong to us. I have an app with doc in northgate.

Jump to this post

@learningstudent Regarding seeing your PCP first. Your insurance company will have to answer that question. Check with them before visiting a new doctor.

REPLY
@learningstudent

Thx u. But do we have to see the primary doc first? There are a lot of clinics that belong to uw medical center. Do they still belong to us. I have an app with doc in northgate.

Jump to this post

Hi learningstudent,
Your questions can only be answered by Uof wash.medical center, and your insurance company. It all depends on what kind of health insurance you have. With your symptoms
You need medical attention, and the sooner the better.
Take care,
Funcountess

REPLY

The question is if uw is somewhat similar to Mayo Clinic? I am just wondering how quick and how they diagnose the problem? Do multiple docs work together to come up with the diagnosis? Will uw medical center does the same thing? Cuz I have seen a few docs in Polyclinic and they do not seem to really care my health without much follow-up.

Here are what I have done the Ana reflex panel and the result is as followed:

– Screen negative by IFA and multiplex.
Therefore negative for the following specific antibodies: dsDNA,
chromatin, ribosomal P, Sm, RNP, SSA/Ro, SSB/La, Centromere, Scl70
and Jo1.”

– Anti SSA/RO & ANTI SSB/LA are less than 0.2.

– VITAMIN B12,SRM and FOLATE,SERUM are also normal within range.

Does it mean that I do not have immune disorder? Cuz I have messaged the neurologist and she said no. I do not have immune disease. Will the result be accurate or the test is only effective to rule out certain immune diseases or just tells us certain diseases are likely to happen? Everything health problem happened to me so abrupt.

REPLY
@learningstudent

The question is if uw is somewhat similar to Mayo Clinic? I am just wondering how quick and how they diagnose the problem? Do multiple docs work together to come up with the diagnosis? Will uw medical center does the same thing? Cuz I have seen a few docs in Polyclinic and they do not seem to really care my health without much follow-up.

Here are what I have done the Ana reflex panel and the result is as followed:

– Screen negative by IFA and multiplex.
Therefore negative for the following specific antibodies: dsDNA,
chromatin, ribosomal P, Sm, RNP, SSA/Ro, SSB/La, Centromere, Scl70
and Jo1.”

– Anti SSA/RO & ANTI SSB/LA are less than 0.2.

– VITAMIN B12,SRM and FOLATE,SERUM are also normal within range.

Does it mean that I do not have immune disorder? Cuz I have messaged the neurologist and she said no. I do not have immune disease. Will the result be accurate or the test is only effective to rule out certain immune diseases or just tells us certain diseases are likely to happen? Everything health problem happened to me so abrupt.

Jump to this post

@learningstudent You posted some lab values several days ago. No one on MayoClinicConnect is a health professional so we’re unable to comment on them, sorry. Have you found anything at UW yet? Just try to get an appointment with a rheumatologist and see if you get any answers. Will that work for you?

REPLY
Please login or register to post a reply.