Possible Sjorgens????
Posted , 8 users are following.
Hi all I am new here and just looking for someone that is maybe in the same boat. I will start at the start! I went for a routine eye test in September 2016 and while waiting for my fairly weak prescription glasses to come home I noticed my eyes were twitching a bit and wanting to close, I put this down to having'rugby ball' shaped lenses and have always scrunched my eyes up a bit to read etc. Anyway this got worse as time went on and went back to the optician and got drops for dry eyes. This became an almost weekly occurrence and it was discovered after a few different lots of drops I am allergic to preservatives in the drops and got preservative free ones ever since. After a few trips to the optician I thought maybe the doctor would be able to offer some other help or advice. After a string of doctors giving me the helpful advice of 'stop touching your eyes, you are doing it to yourself', here's some antihistamines and try these drops the optician finally referred me to an eye specialist. I was given an urgent referral, but because of living in the Scottish islands, it was two months before I was seen to be told 'theres nothing wrong with your eyes, don't worry about it it will get better' and he gave me yet more drops. At this point I was having to hold my eyes open with my hands and had been signed off work for two months. I have had two lots of blood tests that have come back negative for thyroid disease and any auto immune problems. I have been referred to a rheumatologist but again because of where I live I will have wait at least another two months before I get seen. For a while I was just thinking it was a dry eyes thing but when I wrote a list of every tiny niggle i wasn't so sure! Some of the things I have are
Restless legs and arms
Feeling sick after eating
Numbness in some fingers
Dry ears, mouth and throat and of course eyes
A choking sensation to name a few.
I know I am fairly early in the symptoms at 9 months compared to some of your experiences but I am past my wit's end already 😑 I think the waiting without actually getting any better is the worst! Thanks for reading 😃
2 likes, 58 replies
shirley43769
Posted
Hi all
I am writing to say a huge thanks to everyone who has shared their advice, help and experience on my post. I haven't always been able to write as much as I would have liked as my eyes haven't been playing ball!! I am randomly having a good eye day today, scared of being too hopeful but enjoying being able to thank you all properly 😃 Today I have hope and am feeling a lot brighter - onwards and upwards!!
Take care all of you, thanks again
Shirley
brenwag68 shirley43769
Posted
Take care... 🤗😘🤗😘🤗😘
shirley43769
Posted
Hi all
I am back for another moan! I have had two doctor appointments in the last few days, one with the Dr linked to my work and the second with my usual gp. Unfortunately neither has given me the answer I feel I really need. My work Dr was really just to say I am not fit for work and my GP (who is really good and understanding) has emailed the rheumatologist a month ago and hasn't heard back from him yet. She told me this isn't unusual to wait so long. Frustrating is an understatement! I know the rheumatologist will be here in august but I have a feeling the chances of seeing him then are slipping through my fingers, if I don't it will be October at the earliest I could be seen.
Just fed up, joint/limb pain is on the up and eyes are much the same as they have been.
Still holding on for that better day.
Hope you are all doing well