cmtg
@cmtg
@cmtg
Posts: 18
Joined: Aug 20, 2016
Sjogren’s Syndrome – Introduce yourself and meet others
I have been diagnosed with this and I’m in pain most days and would like to have discussions.
Liked by Mamacita, Alumna Mentor, maryy, treebilder
cmtg
@cmtg
@cmtg
Posts: 18
Joined: Aug 20, 2016
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.
Does anyone have earaches from Sjogrens?
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cmtg
@cmtg
@cmtg
Posts: 18
Joined: Aug 20, 2016
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.
Wanted to know if anyone has nausea from Sjogrens? I have nausea most days, take Tylenol 3 or 4 times a day for ear aches wondering if the nausea is from Tylenol.
kyjeanne
@kyjeanne
@kyjeanne
Posts: 21
Joined: Mar 09, 2016
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.
Nausea is one thing I don’t have much with Sjogrens. I do get it from Ropinorole, I take for restless leg though. I have lost hearing enough to wear hearing aids, and I’ve wondered if it could be because of the dryness of Sjogrens. Fatigue and aches and pains are my worst complaint. Lately, my tongue is very sore, and my parotid glands are swelling and painful, newer symptoms for me.
blindeyepug
@blindeyepug
@blindeyepug
Posts: 157
Joined: Apr 30, 2016
cmtg
@cmtg
@cmtg
Posts: 18
Joined: Aug 20, 2016
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.
lI have lost some of my hearing too, I’m confused and wondering why you thought dryness might be causing hearing loss. Aches and pains I have also. Dry skin is a big issue especially on my scalp. Dry eyes, mouth, saliva gland blocked a little and Dr cleared the gland. What was the first thing you had with this sojourns? Mine I had abdominal pain, seven years ago and that is how long it took to diagnosis me.
kyjeanne
@kyjeanne
@kyjeanne
Posts: 21
Joined: Mar 09, 2016
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 first symptoms were dry eyes, mouth and skin. I now have lots of aches and pains, chronic fatigue, memory fog, and other things mentioned before. I had to quit work last October and filed for disability. I also have other health issues.
Liked by JohnWBurns, maryy
JohnWBurns
@johnwburns
@johnwburns
Posts: 289
Joined: Jun 02, 2015
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.
Sorry to hear that. I have it too and its much nastier than many people believe.
Do you have a question or questions about some aspect of Sjogren’s such as medications, complications, co-morbitities?
Liked by Ali Skahan
marylou705
@marylou705
@marylou705
Posts: 103
Joined: Oct 04, 2016
I have Sjogrens, concomitant with Psoriatic Arthritis. Also having thyroid problems. I have scarring in the macula of my left eye and am experiencing some hearing loss and sometimes trouble swallowing. RA runs in my family. I have been on Enbrel and Remicade. Now waiting to begin Orencia by infusion. .
Liked by John, Volunteer Mentor
graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
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?
graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
I totally lost my hearing in my left ear overnight. Doctors said the MRI showed those hairs in the cochlear had died….
graveltruck
@graveltruck
@graveltruck
Posts: 8
Joined: Nov 03, 2016
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.
There is fluid in the cochlear which Sjogrens could affect.
kyjeanne
@kyjeanne
@kyjeanne
Posts: 21
Joined: Mar 09, 2016
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
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! 🙂
Liked by Kanaaz Pereira, Connect Moderator, brdl
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2496
Joined: Oct 09, 2016
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
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?
Liked by John, Volunteer Mentor
@johnwburns
Ok. If you’re satisfied with it, and it covers your complaints, sure.
Do you have a question about Sjogren’s?