My new RA recommended that I see an ENT to observe my saliva glands. When I saw my ENT for my thyroid operation, he just concentrated on the thyroid and seemed disinterested with the whole Sjogrens aspect of my condition.
Basically, he's more of an plastic surgeon, etc.
Is it really necessary for me to find an ENT doctor for my salivary glands?
The RA said I do have a dry mouth, which I use Biotene to handle the times when it is pretty dry. But I don't feel like I need one now.
The real dry mouth is usually when I wake up. It use to be worse, but I guess it comes in waves.
Just wanted a head count to see how many of us use an Ear Nose and Throat doctor to keep watch over our salivary glands and why.
All responses are appreciated.
Not sure what to say here. I guess the only way you'll find this out for sure is to revisit him. He may be the type of Doctor who wants to address one thing at a time, or that he addresses the most critical issue first, or he could be disinterested in SS.
You may want to tell them specifically that this next appointment is to address the salviary glands and see how it goes. It would be great if you could see one Dr for both!
Good luck to you!
Interesting. I hadn't heard that one before. I have issues with allergies and asthma so I see someone that specializes in those. It helps since I get the swollen glands in the throat a lot and he understands how a person's entire system works so it may be that it will help to find an ENT that understands SS.
I thought that because of the dryness people with SS are more likely to get stones in the salivary glands, so perhaps he's wanting to keep a check on that? To be fair to the docs, although it's a pain for you to keep seeing different specialists, they probably have to cover their own backs, and ensure that nothing is missed by sending you to those more knowledgeable in potential 'problem' areas for SS. In the UK you have to fight to get any help, never mind having too much!!
All that keeps running thru my head is "MORE MONEY". Yeah, I have insurance Medicare, but even the 20% can be a burden. This last ENT charges $350 just for a visit. Then it's the extra meds, if any. I don't want to take any salivary meds. I don't feel at this point that I need them.
But I understand. It's gonna be another hard search for an ENT that handles SS and takes my insurance and is accessible. I don't have a car and have to take a transportation service.
As you said, YET another doctor to my list. All I do is see doctors. Today I see my ophthalmologist for the first time. It's just almost as tiring as the SS.
I take herbs for the dryness problems, after several years of having painful ulcers under my tongue and along both sides, my tongue was so thick and swollen I had difficulty swallowing our talking at times. I went to an ENT, Dermatologist, Dentist, no one could decide what was causing it.
Finally read up on natural suggestions from a group linked to Ben’s and started taking Marshmallow Root and Licorice Root, N-Acetyl-Cysteine, which helps with mucus and lungs Sam’s after years have great relief.
I think it depends upon the individual doc. Some will be helpful, others, not. Many think SS is never serious enough to mess with. You may have to push if you can’t get a referral from your rheumy. I hope you have good luck
I have to see an ENT from time to time as my face swells due to blocked salivary glands, I also have a dislocated jaw and I feel it is from the Sjogrens .
I can't discuss a medical suggestion, which is for sure motivated. Personally, I saw an ENT only at the time of my diagnosis and this one was the purpose of the visit. My mouth is very dry and I've severe teeth problems (a great bargain for my dentist, but she's a very kind person and she knows well SS, she's been the first doc to realize what was happening).
Anyway, I believe that our wellness must be our first thought and we can't feel overwhelmed by any kind of pressure. Maybe there's a lack of communication about the reasons of this medical prescription. I think we always need trust and motivation.
All the best,
I’m waiting for an ENT referral myself. I’m having swallowing issues as well as inner ear problems. Hoping this will help my dizziness.
I went to an ENT right at first per my referral from my Dr. He is the one that took the biopsy from my salivary glad. I thought it was to confirm Sjorgrens, for that is the only reason at that time I went to see him.(?)
I feel your pain. I am currently seeing rheumy (of course,) primary care, dentist, oral surgeon, optometrist, opthamologist, and endocrinologist. I’m 42. My 83 year old grandmother has fewer docs.
I would recommend word of mouth to try to find docs that will be a good fit. I say this because I know what a huge burden it is (time, energy, and financially) to go to different drs without results.
Feel free to ask your rheumatologist if it’s necessary. They work for you!
If it is, go online to one of the sites that rate drs. They are not 100% reliable, but you may be able to get info that’ll help.
Call and ask questions. I have a medical background so this may be easier for me, but I will call up an office, tell them I have X. Then I ask if this physician deals with X very often. You can often tell by that person’s reaction. If they act hesitant or like they have no idea what you are talking about, you may want to move on down the list or at least ask to speak with a nurse.
A caring, secure caregiver will take time to answer questions and will not be offended by an informed pt.
If you have a local autoimmune support group, you may ask around about who is “good.” Keep in mind that what is good for you may differ greatly than what is good for them. hugs
I am beginning to feel as if I should take this leap. My mouth isn't so dry, but there are times I do have difficulty swallowing. I really think I just need to slow down and chew more and sip in between bites.
I find that this illness can be dismissive by so many doctors who don't know or understand it at all. I find that saddening.
I'm just gonna give it some more thought, thanks everyone for the advice and chiming in.
The dismissive attitude in regards to autoimmune diseases is endemic. Autoimmune patients need to be very assertive. Grrrrrrrr.
You got to hold on.
The fear of the side effects from saliva producing drugs is what keeps me from seeing and ENT. I need to get my thyroid TSH under control first. One thing at a time. I will do what I need to do with water, Biotene and avoiding stuff which dries out my mouth.
I just want to be in a stable place before I take on another aspect of SS. It's getting kinda overwhelming