I was diagnosed in 2010 but now recognize I have had Sjogren's since childhood. I hurt so bad ever day. Right now it is my lower back and both hip joints. Also, does anyone else find their sense of smell is weird?
I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did't make myself clear to you.
My sense of smell has definitely been affected. I can't smell as well, but sometimes it is worse than others. For example, many times I can't even smell a dead skunk on the road, while my husband really complains. So, it is sometimes a blessing! 🙂
Hello @graveltruck,
Welcome to Connect. Although Sjogren's has been known to cause ear issues, it must have been awful to lose your hearing! I'm so sorry.
There are many members here who have had similar experiences with Sjogren's syndrome. Please meet @marylou705, @kyjeanne, and @cmtg; I'm confident they will be able to give you some information.
@graveltruck, can you tell us a bit more about how you were diagnosed? Have your doctors mentioned anything as to how and why your sense of smell may be affected, and are you on a treatment plan?
I lost my hearing overnight. The specialists called it something like Sudden Sensorial Hearing Loss. All 3 said they see 2-3 patients a year with it. Some regain part or all of their hearing. Not me. Stone deaf. However, I thank God it is silent. No roar or any noise.
I have taken thyroid medication for 30 years and prilosec for probably 10.
The Mayo Clinic diagnosed me thru blood tests.
I went to a rheumotologist but he said Sjogren's was nothing to be concerned about........ My primary doctor takes better care of me.
My doctors do not offer me any helpful solutions other than what we all read about stuff for the dry eyes and mouth. I have found that taking 3 Flax Seed Caps a day keeps my eyes moist. The only thing that is helping my throat are Halls Honey Cough Drops. I keep Avon Care Deeply lip stuff on my lips which does help until it wears off.
I am not willing to take any of the drugs. I personally think the side effects are too dangerous. Just my opinon for me. I do not fault anyone for whatever works for them.
Fortunately, I have primary Sjogren's. I see where there are 3 stages of it and later I may develop Lupus in addition to it attacking my pancreas, liver and kidneys.
Have you considered a cochlear implant? I thought I'd pass on some information from Mayo Clinic, that I was able to find: http://mayocl.in/2fn2TZo
Do go to the 'Expert Answers' tab, as you will find a lot of information on this procedure.
I would also encourage you to connect with @ladyjane85. and @reneewise50, who seem to have found some solution for dry eyes.
Hope this helps.
Hi,
My doc, is going to put "plugs" in the corner of my eyes to help keep them humid. I figure its worth a try, not a drug, ye!
Also have humidifyer witch makes a big diffenrence.
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I was diagnosed in 2010 but now recognize I have had Sjogren's since childhood. I hurt so bad ever day. Right now it is my lower back and both hip joints. Also, does anyone else find their sense of smell is weird?
I totally lost my hearing in my left ear overnight. Doctors said the MRI showed those hairs in the cochlear had died....
There is fluid in the cochlear which Sjogrens could affect.
My sense of smell has definitely been affected. I can't smell as well, but sometimes it is worse than others. For example, many times I can't even smell a dead skunk on the road, while my husband really complains. So, it is sometimes a blessing! 🙂
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2 ReactionsHello @graveltruck,
Welcome to Connect. Although Sjogren's has been known to cause ear issues, it must have been awful to lose your hearing! I'm so sorry.
There are many members here who have had similar experiences with Sjogren's syndrome. Please meet @marylou705, @kyjeanne, and @cmtg; I'm confident they will be able to give you some information.
@graveltruck, can you tell us a bit more about how you were diagnosed? Have your doctors mentioned anything as to how and why your sense of smell may be affected, and are you on a treatment plan?
-
Like -
Helpful -
Hug
1 ReactionI lost my hearing overnight. The specialists called it something like Sudden Sensorial Hearing Loss. All 3 said they see 2-3 patients a year with it. Some regain part or all of their hearing. Not me. Stone deaf. However, I thank God it is silent. No roar or any noise.
I have taken thyroid medication for 30 years and prilosec for probably 10.
The Mayo Clinic diagnosed me thru blood tests.
I went to a rheumotologist but he said Sjogren's was nothing to be concerned about........ My primary doctor takes better care of me.
My doctors do not offer me any helpful solutions other than what we all read about stuff for the dry eyes and mouth. I have found that taking 3 Flax Seed Caps a day keeps my eyes moist. The only thing that is helping my throat are Halls Honey Cough Drops. I keep Avon Care Deeply lip stuff on my lips which does help until it wears off.
I am not willing to take any of the drugs. I personally think the side effects are too dangerous. Just my opinon for me. I do not fault anyone for whatever works for them.
Fortunately, I have primary Sjogren's. I see where there are 3 stages of it and later I may develop Lupus in addition to it attacking my pancreas, liver and kidneys.
Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.
Hi @graveltruck,
Have you considered a cochlear implant? I thought I'd pass on some information from Mayo Clinic, that I was able to find:
http://mayocl.in/2fn2TZo
Do go to the 'Expert Answers' tab, as you will find a lot of information on this procedure.
I would also encourage you to connect with @ladyjane85. and @reneewise50, who seem to have found some solution for dry eyes.
Hope this helps.
I was not one who had anything re: dry eyes,,,...@ladyjane85
Hi,
My doc, is going to put "plugs" in the corner of my eyes to help keep them humid. I figure its worth a try, not a drug, ye!
Also have humidifyer witch makes a big diffenrence.