sounds like sjogrens?

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tlman0804
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/10/2016 2:59 PM (GMT -6)   
Like many of you, I feel like I have been through hell and back over the last 6 months in an attempt to find a diagnosis for the laundry list of symptoms I have been experiencing. I have not been diagnosed with Sjogrens but I am fairly certain that I have this disease or something similar to it. I have an appointment to see a rheumatologist at the end of the month.

For me, it all started when I noticed two swollen glands (lymph nodes) on my neck. Same day I noticed what felt like a little puffed up piece of skin on my lower inner gum right below my front bottom teeth. I saw my doctor and he checked the glands, said they were small and nothing to worry about. As months went on, the glands remained and a wave of other symptoms rolled in. I began feeling extremely dizzy, I developed symptoms of chronic sinusitis, IBS, and acid reflux. I was burping CONSTANTLY. These symptoms would kind of come and go over the following months. I noticed more little puffed up areas on the floor of my mouth, and dryness as well. Sometimes when I would wake up I would notice a painful cut on the piece of tissue that connects my tongue to the floor of my mouth due to the dryness. I saw my doctor a handful of times with these issues and he always told me that everything seemed fine and sent me on my way. One of the times I saw him I literally broke down crying in frustration and he ended up prescribing me to an anti-depressant. Eventually he would refer me to an ENT. The ENT tested for allergies which came back negative. He checked my lymph nodes and said they do not feel "scary" to him, and he sent me on my way. It is going on 6 months since I first began to feel unwell. I still have swollen lymph nodes on my neck, the floor of my mouth has swelling in sublingual and submandibular gland areas, As well as other smaller swollen or lumpy areas. I am still getting waves of dizziness, tiredness, sinusitis, IBS, acid reflux, and occasionally yeast infections. I am a 24-year old female. I have not been diagnosed with sjogrens, but based off of my symptoms I feel as though it is a real possibility that I may have it. Please let me know if you have been diagnosed with sjogrens and can relate to any of my symptoms above.

The past several months have been extremely difficult and whatever disease I have is certainly effecting my quality of life. Any advice or help that you may be able to offer is appreciated.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7470
   Posted 10/10/2016 3:39 PM (GMT -6)   
What an odd collection of symptoms!

I don't think Sjogren's would be the first thing that jumps to mind, but maybe some other auto-immune disease that a rheumatologist can help you with.

Be careful to give the Dr a list of symptoms, not a suspected disease! When we mention a particular disease, Drs often get tunnel vision and it makes it more difficult to get a proper diagnosis.

You might look for some Biotene products to address some of the dry mouth issues - they have mouthwash, toothpaste, and some other products that are very helpful for Sjogren's patients.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1646
   Posted 10/10/2016 6:18 PM (GMT -6)   
I agree with Lynwood in that it's an odd collection of symptoms and you need to bring a list of your symptoms on your rheumatologist visit. If you can remember dates of symptoms, duration, and any overlap of symptoms that may help too. Do not say, "Do you think it's (insert disease). Not only will it give the doc tunnel vision, but if the doc doesn't know you he/she will think you're a hypochondriac and once you have a psychiatric label it's hard to shake. The less emotional you bahave, the better your chance of getting a correct diagnosis. Depression was one of my first symptoms and for two years my psychiatrist was the only doc who thought I had a physical condition. I still see him and my psych meds are as essential as my IV infusions are. I hope your visit goes very well! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

waterbee
Regular Member


Date Joined Aug 2016
Total Posts : 104
   Posted 1/20/2017 8:53 AM (GMT -6)   
you may want to look into chronic reactivated epstein barr, which can cause lots of issues with lymph glands. its very brutal. can be helped with antivirals.
Lyme and EBV. tick bite Nov 2014. misdiagnosed. unable to walk by 2015.
IV treatment started 2016 + Amoxicillin, tinidazole. + antivirals.
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