Author Topic: Lip biopsy  (Read 189 times)

Daisy

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Lip biopsy
« on: May 15, 2017, 12:49:42 PM »
Hi all,

Hope everyone is well & not suffering too much.

So today I had an appt with an oral 'expert' - hmm, some expert. It did not go well, she put her fingers around my mouth and said because her fingers didn't get 'stuck' anywhere my mouth isn't 'that dry'. When I asked why at night do I have zero saliva and wake up with my tongue stuck to the roof of my mouth and why at 32 years old do I struggle with such little saliva? She couldn't answer me. I asked about treating the symptoms and I suggested pilocarpine. She said 'well you'd have to talk to a different team about that as we would just give you mouthwash if you did have sjogrens as it's a complex problem to deal with and people just live with it. I am so angry! I get the feeling sjogrens really isn't taken seriously.

Anyway, she suggested a lip biopsy (my bloods were negative) & so I've decided to go through with it. It's on the 11th July. But even if I have sjogrens, she's given me no reassurance whatsoever! I feel like sobbing my eyes out!

Sorry for the rant.

ghostkiwi

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Re: Lip biopsy
« Reply #1 on: May 15, 2017, 04:58:54 PM »
I feel your pain! I had a similar experience! I went to an ENT because my mouth was dry and every time I tried to eat any savory food or anything that made me salivate I was in excruciating pain and my parotid glands were visibly swollen and I started to lose a considerable amount of weight due to the lack of being able to even look at food without being in pain. The ENT took one look in my mouth said well it doesn't look excessively dry or inflamed if it gets worse we can maybe give you an antibiotic. I was like what is worse than losing 30 lbs cause I can't eat without being in pain?? It is so aggravating to have to pay someone that doesn't take you seriously and is essentially of no help at all. I've found that many doctors have never heard of Sjogren's and the ones that have tend to have little experience with the disease and either, haven't seen a certain symptom before therefore it can't be sjogrens, or tend to not take many symptoms seriously.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

Daisy

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Re: Lip biopsy
« Reply #2 on: May 16, 2017, 02:32:58 PM »
It's so frustrating isn't it? It almost seems to be that we literally have to have an absolute bone dry mouth in order to fit the criteria! I'm so frustrated as you are! Considering sjogrens is apparently very common it really shocks me at the lack of knowledge from many ENT experts!

Have you had negative bloods? Or have you been offered a lip biopsy? X

Judie P

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Re: Lip biopsy
« Reply #3 on: May 17, 2017, 02:39:55 PM »
I am going to make this as short as possible.  Hopefully what I learned today will help.  After putting it off way too long, I went to see a dentist who has some knowledge about Sjogrens.  His best friend is the director of the Sjogren's Clinic at UCSF (University of California, San Francisco) and my dentist has also taught classes at UCSF in dentistry.  So he knows a fair amount about Sjogrens.

After my fourth crown fell out, I finally went to see him today.  He took a lot of x-rays including not only teeth but gums, roots, nerves, cheeks and paratoid glands.  He did a five-year set of x-rays to search for all aspects of the mouth, including cancer.  He knew I had been diagnosed through blood work for primary Sjogrens two years ago.  I have 10 cavaties with some under crowns, an abscess in a lost crown (two months ago) that is affecting my sinuses and could have a lot to do with my sinus infections, and much more.  All too sad to talk about.  I am staring at a lot of painful dental work and oral surgery.

Outside of him re-diagnosing me with Sjogren's through a dry mouth, he showed me the five-year x-rays and it showed these little white things inside my cheeks.  He told me they are calcium stones that have accumulated in my paratoid glands from the Sjogren's.  He told me the stones block areas of the paratoid glands causing the saliva not to flow through.  He said this was another way to diagnose Sjogren's.

Perhaps a dentist could do the same for you.  Mine told me that I don't need a lip biopsy because the dry mouth and the calcium stones proves I have Sjogrens.  By the way.... my rheumatologist looked at the bottom of my mouth and told me I had plenty of saliva.  She checks everytime I see her and says the same thing.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

SjoGirl

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Re: Lip biopsy
« Reply #4 on: May 17, 2017, 04:47:11 PM »
Oh I am sorry. My lip biopsy was negative, but my first rheumy told me that didn't matter, I had the blood marker and many other symptoms.

Are you able to shop around for another doc?
Raynauds, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Reclast (once), Restasis, Vitamin D, B12, Gabapentin,Valacyclovir, Evoxac, Nexium, acetaminophen, Tramadol.

ghostkiwi

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Re: Lip biopsy
« Reply #5 on: May 18, 2017, 02:46:48 AM »
-Daisy

BUT ACTUALLY THOUGH! Its like your mouth has to be a desert!

I'm seropositive which makes it even more frustrating when trying to get help and people act like you are making it up. I once had a doctor insist I see a psychiatrist because she couldn't find the root to any of my problems and therefore I had to be making them up instead of it being her own incompetence. Because who doesn't love paying thousands of dollars for made up symptoms? (This doctor also told me that I "would never be hired by anyone for a job" because of my symptoms (which who says that to a person??) and when I told her I was already a very accomplished baker she said "yeahhhh, but is that really the job you wanna be doing the rest of your life" like I swear she's some sort of sociopath i immediately found a new doctor)

I just met with a new rheumy(already super skeptical but he's the only one in my area now) who insisted on me having a lip biopsy before he could treat me so I'll get the results from the ENT on monday.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

irish

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Re: Lip biopsy
« Reply #6 on: May 18, 2017, 07:31:06 PM »
I have a very dry mouth at times and other times the bottom of my mouth will be moist. This is because the saliva glands on the floor of the mouth are close to the tongue and secrete the moisture that pools down under the tongue. It doesn't take a lot of saliva from the sublingual glands to make it look like a lot of fluid. Liquid doesn't run uphill!!! irish