Originally Posted by Billylyne5 (Post 1136149)

Looked at the link - I don't tick any of those causes unless it's the illness one but can't get a diagnosis for that 😏

Ophthalmologist was great she said her treatment is same with or without diagnosis so at least I have good eye drops now on prescription.

Originally Posted by LMPinkereton (Post 1136079)

Exactly the same here. :(

Diagnosed with SFN with skin punch test confirming.
Joint pain a severely dry eyes. Some days I feel like I might collapse if I don't lie down.

I have noticed that when my SFN pain in my feet, legs and arms really flares up my eyes really burn. Then when things subside a little, my eyes stop burn, but are still dry.

I too have been to a rheumatologist and had dozens of blood tests too. Several things are slightly "off" but not bad enough to make a diagnosis for other autoimmune diseases. (I do have Graves) I think I am starting to have more autoimmune problems (like Sjogren's), but nobody seems to want to do anything.

I have been complaining to my eye doctor about my eyes and he says my Graves is in check, just use over the counter eye drops. They do nothing for me.

All I know is whatever it is, it keeps getting worse. Just doesn't seem to be anything anyone wants to do. I have run out of options and places to turn. I've been to several different types of doctors and always end up with no relief.

Yes, maybe someone else will chime in and point us in the right direction???

:)

Originally Posted by Billylyne5 (Post 1136143)

Rheumy agrees I have symptoms of sjogrens and I asked her re 40% of people being sero negative but she said she would never diagonose without a positive blood test.
I have no reason for the dry eyes not on any drugs etc that cause it.
I am in the UK so the early sjgrens test not available here either.

I was convinced it is sjogrens but at the moment I am getting no joy anywhere
Seeing my neuro on Monday so will se where I get with him.

Originally Posted by Healthgirl (Post 1136168)

Did you have the lip biopsy? Maybe you can get a second opinion with a new rheumy?

Originally Posted by Billylyne5 (Post 1136248)

I am only 44 so my symptoms should not be age related, thyroid is all ok, I haver been offered a lip biopsy the Rheumy was only interested in bloods as her way of diagonosing or offering treatment, she actually said be glad I only have SFN and not sjogrens lol yet she also said some doctors will diagnose sjogrens on symptoms alone....then why should I trust her ????



No allergies I even tried antihistamines in case but they did nothing.

I had the schimers test and the evaporation test showing that I have both poor quality tears and not enough of them.



I get a dry throat, hoarseness, also developed GERD at same time.

My joints hurt a lot hands wrists feet ankles. My feet are incredibly painful all the time and are tender to touch on balls of feet, top and ankle joints. Hands and fingers swell, knuckles go red.

I have petechiae that came on recently

Fatigue - like I have to just lie down and can't move tiredness

Numb fingers and toes plus numb areas all over the place, burning pain in feet and random patches -like sunburn

Wierd rib/chest pain tender areas /stabbing pain

Randomly get a low grade fever

My DSDNA test came back equivocal at 17 but Rheumy didn't even mention that

My white count is always on the low to just on normal

Negative MRI and nerve conduction studies

Oh had ultra sound on my wrists and that showed synovial thickening but Rheumy said it wasn't inflamation but mechanical what ever that means - she put that in the letter discharging me so I haven't been able to ask her.



I am very frustrated and feel like I am struggling to manage the symptoms and getting no where near a diagnosis or even treatment.

Originally Posted by Billylyne5 (Post 1136248)

I am only 44 so my symptoms should not be age related, thyroid is all ok, I haver been offered a lip biopsy the Rheumy was only interested in bloods as her way of diagonosing or offering treatment, she actually said be glad I only have SFN and not sjogrens lol yet she also said some doctors will diagnose sjogrens on symptoms alone....then why should I trust her ????

No allergies I even tried antihistamines in case but they did nothing.
I had the schimers test and the evaporation test showing that I have both poor quality tears and not enough of them.

I get a dry throat, hoarseness, also developed GERD at same time.
My joints hurt a lot hands wrists feet ankles. My feet are incredibly painful all the time and are tender to touch on balls of feet, top and ankle joints. Hands and fingers swell, knuckles go red.
I have petechiae that came on recently
Fatigue - like I have to just lie down and can't move tiredness
Numb fingers and toes plus numb areas all over the place, burning pain in feet and random patches -like sunburn
Wierd rib/chest pain tender areas /stabbing pain
Randomly get a low grade fever
My DSDNA test came back equivocal at 17 but Rheumy didn't even mention that
My white count is always on the low to just on normal
Negative MRI and nerve conduction studies
Oh had ultra sound on my wrists and that showed synovial thickening but Rheumy said it wasn't inflamation but mechanical what ever that means - she put that in the letter discharging me so I haven't been able to ask her.

I am very frustrated and feel like I am struggling to manage the symptoms and getting no where near a diagnosis or even treatment.

Originally Posted by Billylyne5 (Post 1136334)

I have eye drops on prescription from the ophthalmologist and I drink 2-3 litres of fluid a day on advice of my nephrologist for my PKD which he assures me is not causing any of my symptoms.



My podiatrist has told me about another test for SFN which looks at your eye and is none invasive I can't remember what it's called I will check later



I think I am going to have to look at a second opinion but being in the UK the refferal a are just done to a hospital team so no idea who you will see and I don't want to have a wasted refferal as once you have had two it's pretty hard to get another

Originally Posted by Billylyne5 (Post 1136248)

I am only 44 so my symptoms should not be age related, thyroid is all ok, I haver been offered a lip biopsy the Rheumy was only interested in bloods as her way of diagonosing or offering treatment, she actually said be glad I only have SFN and not sjogrens lol yet she also said some doctors will diagnose sjogrens on symptoms alone....then why should I trust her ????

No allergies I even tried antihistamines in case but they did nothing.
I had the schimers test and the evaporation test showing that I have both poor quality tears and not enough of them.

I get a dry throat, hoarseness, also developed GERD at same time.
My joints hurt a lot hands wrists feet ankles. My feet are incredibly painful all the time and are tender to touch on balls of feet, top and ankle joints. Hands and fingers swell, knuckles go red.
I have petechiae that came on recently
Fatigue - like I have to just lie down and can't move tiredness
Numb fingers and toes plus numb areas all over the place, burning pain in feet and random patches -like sunburn
Wierd rib/chest pain tender areas /stabbing pain
Randomly get a low grade fever
My DSDNA test came back equivocal at 17 but Rheumy didn't even mention that
My white count is always on the low to just on normal
Negative MRI and nerve conduction studies
Oh had ultra sound on my wrists and that showed synovial thickening but Rheumy said it wasn't inflamation but mechanical what ever that means - she put that in the letter discharging me so I haven't been able to ask her.

I am very frustrated and feel like I am struggling to manage the symptoms and getting no where near a diagnosis or even treatment.