Sjogrens

ally1

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Sorry for not being around for a few weeks.
Last Thursday, I was diagnosed with Sjogrens. Boy has this has knocked me back
So much for my **** GP saying the symptons I have was because I snore. This went on for roughly 16 years. All thanks for my new dentist that I first saw October last year, who got me referred to ENT.
ENT have now put an urgent referral to see the rheumatology dept. No idea how long before I get seen but am now getting or rather being getting the right help/treatment.
I have read up on Sjogrens and quite a few things I have relates to this.

edited by moderator for language
 

Brunneria

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Oh Ally, good that you have finally got a diagnosis, but so very sorry that you now have another diagnosis to deal with.
Have a hug!
 
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ally1

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Oh Ally, good that you have finally got a diagnosis, but so very sorry that you now have another diagnosis to deal with.
Have a hug!
Thank you.
Alot of this boils down to my surgery not helping at all. If I was brave enough, I would see my gp and say, see there is a real reason for my symptons.
 

ally1

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Oh Ally, good that you have finally got a diagnosis, but so very sorry that you now have another diagnosis to deal with.
Have a hug!
Sorry for the word I put
 

carol43

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@ally1
Sorry to hear more troubles with that silly body of yours. Your luck must change soon. Big hugs from me.
 
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NicoleC1971

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Good for you for pushing for a diagnosis. Can you tell us what your condition involves please?
 
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Pipp

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Very sorry you have had such a tough time lately, @ally1 . Now you have that diagnosis it is important that your GP takes it seriously and you should get him / her to draw up a care plan for you, and stick to it. Also get the consultant support in this.

Perhaps this website will be of some use for specific advice and info..

https://www.bssa.uk.net/about.asp

Wishing you well.
 
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DCUKMod

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Oh dear @ally1 - sometimes life keeps giving.

If I recall correctly, @JoKalsbeek has Sjorgrens. Jo, if I have mis-remembered, please forgive me.
 
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ally1

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@ally1
Sorry to hear more troubles with that silly body of yours. Your luck must change soon. Big hugs from me.
Thank you.
I laughed when you said silly body of yours.
When my legs are bad, I call myself Mr bean as I resemble him when he is walking
 

ally1

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Good for you for pushing for a diagnosis. Can you tell us what your condition involves please?
Its an auto immune disease. Can be only dry mouth and dry eyes. I started with these but has progressed onto peripheral neuropathy. Various other symptons.
 
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ally1

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Very sorry you have had such a tough time lately, @ally1 . Now you have that diagnosis it is important that your GP takes it seriously and you should get him / her to draw up a care plan for you, and stick to it. Also get the consultant support in this.

Perhaps this website will be of some use for specific advice and info..

https://www.bssa.uk.net/about.asp

Wishing you well.
Thank you.
To be honest, at the moment, I don't even want to see my gp, let alone seeing any other gp at the surgery
 

Pipp

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Thank you.
To be honest, at the moment, I don't even want to see my gp, let alone seeing any other gp at the surgery
That is hardly surprising, but you are strong, and able to stand up for yourself. They need to know you need a care plan, and to make sure they adhere to it and provide the right support.
 
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JoKalsbeek

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Sorry for not being around for a few weeks.
Last Thursday, I was diagnosed with Sjogrens. Boy has this has knocked me back
So much for my **** GP saying the symptons I have was because I snore. This went on for roughly 16 years. All thanks for my new dentist that I first saw October last year, who got me referred to ENT.
ENT have now put an urgent referral to see the rheumatology dept. No idea how long before I get seen but am now getting or rather being getting the right help/treatment.
I have read up on Sjogrens and quite a few things I have relates to this.

edited by moderator for language
Oof, yeah... It's not a fun condition to have. I'm so sorry you got hit with this. I have no idea how any of the symptoms could possibly relate to snoring though. Oh yeah, maybe the fatigue..? Still. It's a relatively rare condition to have, and a lot of docs never figure it out.

I always had to drink with food. I couldn't get it down my throat any other way. Never knew it was a matter of not producing enough spit due to chronically inflamed salivaglands. The eyes require artificial tears, which isn't the heartache I thought it was going to be... The inflamed joints were another story. The doc wanted to put me on a small dose of prednisolone for that, but at the time I was still well over 100 kilo's and wasn't looking forward to gaining more. (And I didn't know I was prediabetic at that point either). You know how carbs are inflammatory? So's cow's milk, and eggs. I switched to goat's milk/cheese years ago, and after a while, when eggs became problematic too, I cut those out for a while. Once I started with LCHF the inflammation flare-ups reduced further, and sometimes I can have a little (cow) cream or butter! Not two days in a row though. But it was with keto that I finally got the eggs back into the equation, I think... Brain's a little foggy today, sorry. (Our cat passed away on Friday, so I'm not quite there.). The eggwhites used in the annual flu jab do turn my hip joint into ground glass for a few days, but that's the only time I still respond badly to something eggy. All in all, you figure out what works for you, much like with T2. I'm not on steroids for it, just the eyedrops. But I do remember a time where I had my hair cut really short because I couldn't hold a brush, and I couldn't turn/hold the key to the door without crying with the pain of it. Especially bad when it was cold. The pain would keep me awake at night, like a hot wire running through my fingers, wrist and hip especially. Cutting out the cow milk products reduced inflammation within a month. I got that tip for my mom's reumatologist over in Tilburg. (Mine's here in Baarn.) The weird thing is, when she first did the intake with me, she said "I know this sounds silly, but how much milk do you drink?" That was about a carton and a half per day, as I was rather big on milk. (It replaced lunch for me). She wrote it down and never mentioned it again. So when the other reumatologist suggested I quit the dairy for a while, that... You know. Lightbulb moment. I don't think I ever had neuropathy, but I can't be sure. My feet burned, got red and felt like a thousand needles were in them, but that's also a symptom of Hashimoto's. I haven't had a flare-up of that since low carbing and cutting cow milk either. So who knows?

All in all... Maybe looking at diet, again, might be beneficial. Because as far as I know there's very little that can be done about Sjögrens besides steroids and eyedrops, (Dunno if Amitriptyline would help for neuropathy that isn't caused by diabetes?) and with T2 in the mix... You might want to explore the alternatives first.

Good luck!!!
Jo
 
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ally1

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That is hardly surprising, but you are strong, and able to stand up for yourself. They need to know you need a care plan, and to make sure they adhere to it and provide the right support.
I know I need to confront him
 

ally1

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Oof, yeah... It's not a fun condition to have. I'm so sorry you got hit with this. I have no idea how any of the symptoms could possibly relate to snoring though. Oh yeah, maybe the fatigue..? Still. It's a relatively rare condition to have, and a lot of docs never figure it out.

I always had to drink with food. I couldn't get it down my throat any other way. Never knew it was a matter of not producing enough spit due to chronically inflamed salivaglands. The eyes require artificial tears, which isn't the heartache I thought it was going to be... The inflamed joints were another story. The doc wanted to put me on a small dose of prednisolone for that, but at the time I was still well over 100 kilo's and wasn't looking forward to gaining more. (And I didn't know I was prediabetic at that point either). You know how carbs are inflammatory? So's cow's milk, and eggs. I switched to goat's milk/cheese years ago, and after a while, when eggs became problematic too, I cut those out for a while. Once I started with LCHF the inflammation flare-ups reduced further, and sometimes I can have a little (cow) cream or butter! Not two days in a row though. But it was with keto that I finally got the eggs back into the equation, I think... Brain's a little foggy today, sorry. (Our cat passed away on Friday, so I'm not quite there.). The eggwhites used in the annual flu jab do turn my hip joint into ground glass for a few days, but that's the only time I still respond badly to something eggy. All in all, you figure out what works for you, much like with T2. I'm not on steroids for it, just the eyedrops. But I do remember a time where I had my hair cut really short because I couldn't hold a brush, and I couldn't turn/hold the key to the door without crying with the pain of it. Especially bad when it was cold. The pain would keep me awake at night, like a hot wire running through my fingers, wrist and hip especially. Cutting out the cow milk products reduced inflammation within a month. I got that tip for my mom's reumatologist over in Tilburg. (Mine's here in Baarn.) The weird thing is, when she first did the intake with me, she said "I know this sounds silly, but how much milk do you drink?" That was about a carton and a half per day, as I was rather big on milk. (It replaced lunch for me). She wrote it down and never mentioned it again. So when the other reumatologist suggested I quit the dairy for a while, that... You know. Lightbulb moment. I don't think I ever had neuropathy, but I can't be sure. My feet burned, got red and felt like a thousand needles were in them, but that's also a symptom of Hashimoto's. I haven't had a flare-up of that since low carbing and cutting cow milk either. So who knows?

All in all... Maybe looking at diet, again, might be beneficial. Because as far as I know there's very little that can be done about Sjögrens besides steroids and eyedrops, (Dunno if Amitriptyline would help for neuropathy that isn't caused by diabetes?) and with T2 in the mix... You might want to explore the alternatives first.

Good luck!!!
Jo
I only have skimmed milk in tea.
I used to be a big milk drinker.

I really need to change my diet but I will need help with that.

Thank you
 

JoKalsbeek

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I only have skimmed milk in tea.
I used to be a big milk drinker.

I really need to change my diet but I will need help with that.

Thank you
You'll figure it out. Give yourself time.
 
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