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An update on what is happening

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#1 debz


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Posted 11 November 2009 - 12:55 AM

Hello everyone,

I have had a few things going on lately. First I had a dilatation of the esophagus on the 30th October and so far I feel the same....food still feels like it is getting stuck. Does this get better? My GI doctor couldn't do the stretch he wanted to do as I couldn't fit the adult mouth piece in my mouth so had to opt for a smaller one, which meant he couldn't do the medium stretch. I am wondering if that may be the reason why I haven't noticed an improvement.

Sorry, that was just what has happened the last month. This month I went for pulmonary function testing. the first lot of tests which tested volume etc were all okay but today I had the provocation tests and it showed I am hypersensitive. Which boiled down to my numbers (I don't know what that was either?? was trying to breathe while they were explaining things to me) dropped the 15% very quickly before the test was completed. I was in distress, but once they gave me the ventolin, I was alright after about 6 puffs of it. My husband is asthmatic, but I didn't think I had asthma? I get short of breath, but it is nothing like my husband so this has confused me! The doctor who did the test said I would need to see a respiratory/pulmonary specialist and that my rheumatologist would get the results and discuss them with me. Could this just be asthma? I know you are not doctors and the fact that I haven't been diagnosed with scleroderma, only Sjogren's confuses me more. I have definite dysmotility and GERD and now the breathing issues. I am a tiny bit frightened to be honest. Could Sjogren's be responsible for the breathing problems too? I do have other symptoms, but at the moment the esophagus and breathing problems are taking up most of my energy, which I don't have alot of these days. I am very fatigued which is a huge thing with me. I have been trying to find answers to this for years now! I am going to have serious talks with my rheumatologist! I can't be too hard on him as my old one retired and he is new to 'me'. I am a difficult case and have been very atypical in presentation - their words not mine hahaha!

Any thoughts would be appreciated, as I am at a loss to know what is happening right now. The breathlessness is happening way to much! It used to be only when I was exercising etc. now it is happening randomly, when I am not expecting it - like answering the phone - crazy! But I have people asking me if I had been running to answer the phone, when I haven't. I know Sjogren's can do some awful things, is it capable of this? My GI doctor has not commented on what he thinks 'it' is as he has said there is a spectrum that this falls under and Sjogren's can be part of that spectrum....What do you think of this spectrum? I keep thinking of the colours of the rainbow hahaha!! Seriously, I am a bit worried...



#2 Shelley Ensz

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Posted 11 November 2009 - 05:18 AM

Hi Debz,

I'm very sorry you're encountering so many health issues and send lots of extra warm hugs your way. I know what it is like to go through a long and very confusing spell of getting evaluated and properly diagnosed.

As it happens, Sjogren's can go systemic in about 1/3 of Sjogren's patients, and when it does, it's symptoms can significantly overlap with those of systemic scleroderma. Especially when you consider that about 20% of scleroderma patients also have Sjogren's, you can see the difficulty they have in sorting things out.

We have to wait, right alongside you, for the results of your pulmonary testing. There are many things those tests can show, other than just asthma, and it is probably the combination of all the results that will be the most important.

One thing that might help is trying to determine if there has been a change in the actual size/shape of your mouth over recent years. Sjogren's could cause dryness that makes swallowing food a challenge, but it wouldn't cause the mouth to get smaller, which is called microstomia and could be caused by scleroderma. Some detective work you could do on that would be to look at old family photos, see if there is a noticeable change or if your mouth was always just small. If it looks like a big difference, then you could ask your dentist to review x-rays going back so many years, see if there is a measurable change detected that way.

Within just a few years, my dentist had to go from using adult-sized equipment on me, to medium-size, to child-size; and meanwhile I had lost a lot of teeth as well, almost going in a straight line from back to front as the mouth and ligaments were affected. I also have Sjogren's; but Sjogren's doesn't cause microstomia, so that was just one more piece of the puzzle for diagnosis, and for trying to distinguish overlapping conditions.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#3 debz


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Posted 11 November 2009 - 12:52 PM

Hi Shelley,

Thank you so much for your reply! I am going to discuss this with the rheumatologist when I see him on the 18th Nov, so not too long to wait and I am terrible at waiting hahaha! I had not thought about the small mouth. I am not sure about that to be honest. I do know that last year when my GI doctor did the first endoscopy, he had trouble with the mouth piece, but eventually we squished it in. This time around (dilatation), they couldn't fit the mouthpiece in, so opted for a smaller one. Hmmm, I will investigate this a bit further - Thank you Shelley! I am due to go to the dentist also soon, so will talk to him about it. I am not a frequent 'dentist goer' as I have a severe phobia - but the last time I went he did xrays etc, so they would know if they did some this time if there have been changes?

I think I made a bit of a mistake saying that the provocation test showed hypersensitivity, but I think he said hyperreactivity - but I am not sure. I just don't know if his explaination of asthma totally sits with me.

Again thanks for the reply, I am going to get my thinking cap on and go through some old photos and see what I can find :)

hugs Debz

#4 Amanda Thorpe

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Posted 11 November 2009 - 01:17 PM

Hello Debz

Hang in there and keep us informed. Not knowing what's going on can be as difficult as getting an unfavourable diagnosis. When I was diagnosed with sytemic sclerosis it was like being hit with a brick but not knowing would have been just as bad.

Take care.
Amanda Thorpe
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