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Gastro Doc Update

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Hi all,


it seems forever since I posted, but I guess thats because I have been feeling pretty good, thats good in a way!!


Finally saw the Gastro specialist 6 months after having my endoscopy. He confimed my chronic gastritis and said to continue with Losec and Motilium to empty my stomach.

He also said he felt like I may have Metabolic Syndrome, and gave me a year to lose some weight, and if it didn't he would recommend me for lapband surgery! That really surprised me. I know I am overweight, but I thought that was extreme.


He said that Metabolic syndrome can cause aches and pains, and didn't agree with my rheumatologist's thoughts on a Connective Tissue Disease as my labs still aren't showing too much other than a high ANA, but add all my clinical symptoms and you can see why the rheumatologist is treating me.


Its kind of annoying to have one specialist totally disagree with what the other thinks, but I guess they can have their own opinions.

The one thing I agreed with, with the Gastro guy was to go off the Prednisone, which the rheumatologist was going to take me off in January anyway.


So I have been reducing from 7.5mgs, I have made it down to 3.5 over the last few weeks and today noticed a patch of inflammation come back on the roof of my mouth. I Haven't had that in a year and the rheumatologist said if I ever got it again he wants it biopsied........not sure who to go to for that?


I am still waiting to see the Neurologist for my nystagmus and tinnitus and also the Hand specialist for my carpal tunnel.


Thats all I can think of for now,


take care everyone!!!



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Girl - you sure do have a lot going on, not to mention keeping up with your 3 boys! Thanks for the update. That's crazy when a doctor totally reverses the diagnosis of others. There's more to a diagnosis than ANA. Just stay on top of things and make sure the doctors know about all your symptoms. Glad to hear you're coming off the prednisone! I'm down to 2.5/day. My rheumatologist's going to keep me there for a while. Good luck to you.


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Irene,

I was just thinking about you the other day and realized you had not been posting. My kids are only a few months away from moving to NZ. I'm spending every minute I can with my grand daughters before they go.


Seems like we don't know if we are coming or going sometimes with this disease. Like Janey said, keep on top of all of this to keep the doctors straight. Also as far as the biopsy of the roof of your mouth, your regular primary care physician should be able to do that, or if you want a specialist then I would choose a dermatologist doctor.


So great to hear from you!

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Janey and Pam,


thanks for the replies!

I know my rheumatologist would be horrified with what the GI doctor said, but I am just sticking with what I feel in my body and I tend to side with the rheumatologist, who knows , as this autoimmune diseases have many faces.


I had to go back up to 5mgs of Prednisone I just couldn't handle the 3.5, probably went down too fast, I felt awful, sore and very tired, ugh I just HATE coming off Prednisone!!!!


Turns out the inflammation patch on the roof of my mouth is Candida, so I am getting treatment for that and probably won't need a biopsy, although it doesn't look like thrush to me, but they did a swab and thats how it came back.


Still desperately trying to lose weight. Its not that I eat too much, I eat very healthy, but I struggle to exercise, I am sooo fatigued and if I try and add extra movement and exercise into my day, I am wiped out for the whole of the next day, ugh, I just don't know what to do!


The stupid thing is that I really don't have an appetite at the moment, and I am just eating because I know I have to, but I am full of fluid my fingers are like stubby sausages and my general practitioner had to increase the fluid tablets in my BP meds as my BP decided to settle at 160/95 for the last month. The other day I put on 2kgs of fluid overnight, but she is checking my kidneys and all the regular stuff, so we will see!


okay enough of my ramble,


take care, and I promise to write more often!!!! you guys are the best,

Irene ;)

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