Sjogren's

[Jinnty89]

Hello, I hope this post finds you all safe and well as you can be.

I recently posted about just finding out that as a child I had been diagnosed with Larsen Syndrome. All of you lovely people pointed me in a direction to find out more.

At the moment I am suffering with really quite bad arm weakness. My top arms just can’t hold up the same, especially my left arm. I can only use it for about 20/30 seconds before I have to test it, so my dr prescribed physio. Why, no idea, but on meeting the physio, and talking to her, I explained about just finding out about Larsen Syndrome, and was stunned to hear that on her notes, the dr had wrote down that I had Sjogren'sSyndrome as well. Now I finally get to the question. Are these 2 connected as roughly being the same condition? I am at the moment, reeling from being told this, and I’m beyond angry about now just finding out about these 2 things. I’m 54, and only found out by chance of the Larsen Syndrome, and now less than 4 months after getting my notes, I’m told I have this Sjogren syndrome. Where does it end, is there more to come out in the wash when I request my hospital records. Any info, please would be really helpful and hopefully bring some peace to my mind, instead of the fear, rage, worry and outright anger.

Take care and stay safe and well as you can.

[Deeb1764]

Is it worth calling the GPs and making sure what they have for your diagnosis and making sure something has not been added or input error for your peace of mind. With AI illnesses I have found out you get one and you can get more I am am 56 and now have 4 of them within 3 years. I think a GP chat or recheck is definitely needed

😘

[KittyJ]

When I just looked up Larsen syndrome it said “not to be confused with Sjögren–Larsson syndrome” so definitely call your doctor and get this sorted out so you know what you are actually dealing with. Good luck 🤞🏻