Possible Sjogrens Disease

Posted by j77 @j77, Apr 3, 2024

I have had an undiagnosed illness for over 2 years.No Doctor can figure it out.I have many symptoms,but two major ones are extremely dry eyes that feel like sandpaper are squinty,lack muscle movement,blurry with floaters and can barely be in the sun.I also have muscle weakness all throughout my body especially my trunk of the body/pelvis and hips.I can barely walk.I have gained a ton of weight in the last year and my upper arms and legs are so big and inflamed.My upper arms remind me of how they were before I was diagnosed with Hashimito's Disease.It is not normal fat,but tons of inflammation.This was all brought on after an iron infusion/possibly covid.Does anyone with Sjogren's have extreme muscle weakness throughout the body?Even the muscles in the trunk to go to the bathroom are completely gone.Gastroparesis is not involved either.I was already checked for that.I went to the Eye Doctor and she performed a test to determine the dryness of my eye and I think it waa a 1.She had only see one other person with eyes as dry as mine.I have only had thyroid disease for years and I only take 50 mg of synthroid.I don't take any other Medication.We have alot of Lupus on both sides of the Family including my Mother.The Rheumatologists I have seen tell me that my symptoms are not being caused by an Autoimmune Disease.I have had a few positive ANA's with a high speckled pattern of 1.80,but I have had a few negative ANA's as well.I was very Healthy besides heavy periods from Anemia before this all came on.Any help would be appreciated.

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@celia16

How did you get your insurance to cover Meibo?

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I would pay out of pocket and use goodrx. My thyroid med isn’t covered under my insurance and I pay a lot for Tirosint. I have many allergies to fillers in meds.

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@pamper

please do let me know. im a praying person, so i'll pray 4 a good outcome!

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so, u said Tues ur big day-good luck!

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@pamper

so, u said Tues ur big day-good luck!

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Thank you!

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@mothermary1

I have a new pcp in August and I’m going in with a nice voice but a list of symptoms,photos and past lab results.
This is a true story. My last pcp thought what I was experiencing, how odd it was, I could be suffering from depression. Now, I do suffer anxiety because I have bilateral tinnitus and some days do get extremely loud for me and it can give me anxiety.
I was so sick of listening to him say this to me he said I’d like you to see a psychiatrist. I was all in, to prove his wasted diagnoses, his time and mine.
I said absolutely, your choice too. I get a 90 minute visit, lovely doctor who I felt like I shared my life with and she said I will send your doctor a letter. In my opinion there is absolutely no types of depression I can diagnose you with. You are a 69, well groomed, well spoken woman. I can see the tinnitus as being tuff sometimes but you absolutely don’t suffer depression. Of course she went on and on with other things in her letter.
I made an appointment and met with my doctor and said I have suffered from something. I hope it’s not serious because your diagnosis is depression. I hope you have learned something from our experience. Just maybe not everyone who has odd symptoms suffers depression. My rashes, bumps on my fingers, crazy itchy scalp should be a sign to do something and you did, you sent me to a psychiatrist. You are wrong and I’d be wrong to continue as your patient. I shook his hand, thanked him and walked out. Yes, I did report him to the hospital. Now I’m moving on.

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@mothermary1 Good for you for walking out and reporting him! I had tinnitus in my left ear from an air blast to my ear about 27 years ago . Now in both ears, I notice mine gets louder when my necks flared. I got hearing aids last year and was told they won’t help with tinnitus well they were wrong when I have them in I don’t hear the tinnitus. I wish doctors would listen to us I had a lumbar fusion 2 years ago 4 weeks later someone twisted me, then the next week his NP said it might be a set back but you can lift , bend, and twist so I went home and bent down to dry my lower legs and got a burning sensation that never went away. My pain got worse so I went back to the surgeon being pushed in a wheelchair because I couldn’t walk that far. I told him I could rub my tailbone and the pain goes to my testicles and also the inner thighs are supposedly danger zone if they get tender all he says is no you don’t have that ( never got me out of the wheelchair or touched me to see) I’ll be 53 next month and have been disabled because of the jerk not further checking me for over 2 years. All he said was get a spine stimulator . I seen 2 other surgeons whom looked at the same MRI he did same thing get a stimulator. I finally went to Mayo Clinic and found out I had a screw loose in my back not my head but told to leave it alone .

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