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Probably Sjögren's Syndrome all along.....

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Megan17, Mar 29, 2016.

  1. kangaSue

    kangaSue Senior Member

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    I know that feeling, at least I have been able to contain medical costs somewhat by having most of my care through the public hospital system.
    Getting tested for AAG has been a drawn out affair. I first bought it up with my G.I. specialist (a motility specialist apparently, the highest authority at QLD Health, Royal Brisbane Hospital) over 2 1/2 years ago. It finally come about by luck though, I've been persisting for the last 12 months in trying to get a trial of dexamphetamine because of it's beneficial use in some instances of chronic pain and I don't tolerate any other analgesics.
    http://www.ncbi.nlm.nih.gov/pubmed/17937098

    A last ditch effort to give me a brush off on that idea was to first do an Autonomic Function Test (AFT) panel as it was strongly suggested to me that I lacked other autonomic dysfunction symptoms for dexamphetamine to be effective. After I had failings in four of the five tests in the AFT panel, I was finally taken seriously on it maybe being antibody related as well.

    All I can suggest in dealing with specialists on this issue is to have some good evidence in the form of clinical and research articles and don't say "I think it's.....", rather, ask politely "Could it be possible to have......."
    A couple of articles for testing on the basis of gastroparesis alone that I used;
    http://www.ncbi.nlm.nih.gov/pubmed/17101331
    http://www.ncbi.nlm.nih.gov/pubmed/18599359
    http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction

    The G.I. still wouldn't act on anything until I had been seen by a Neurologist so waiting times in the public system are a problem but I was seen relatively quickly in the end. Again, as luck would have it, the Neurologist was familiar with autonomic ganglionopathy and didn't need prompting from me to order the AChR Ab test after taking my history, that was a relief after the resistance I had from my G.I. doc.

    A hurdle with this particular test (a3-nAChR Ab test) is that it isn't done in Oz, blood has to be sent to either the U.S or U.K. It can be handled through one of the private pathology labs (at a cost, I was told $300 for just this test) but the Neurologist said it was warranted for Royal Brisbane Hospital to bear the cost, the only drawback being that each patient's blood doesn't get sent separately, it's held until there's batch of other samples bound for Mayo.

    I'm lucky to have a very supportive G.P. (General Practitioner) in my corner too. He ordered some of the antibody tests that can be done here, major pathology labs can do the voltage-gated calcium and potassium channel tests but they're about $100 for each ion channel type with no Medicare rebate. My G.P. tipped me off that if I took the pathology request to a public hospital pathology dept, they often don't charge you so I tried it out and he was right, no charge.

    I have a low antibody titre for N-type voltage-gated calcium channel and the acetylcholine receptor for myasthenia gravis which was mistakenly done instead of the a3-nAChR Ab test but both were considered normal. One's left to ponder if a low normal antibody count is only normal when you don't have symptoms of chronic autonomic dysfunction. That's a fight for another day if the Mayo results are negative.

    Because I have a similarity of symptoms to Sjogren's Syndrome (no ANA antibodies though), my G.P. also referred me to the RBH for an Immunologist consult as they also have a Sjogren's Syndrome unit there. He tested and cleared me for Sjogren's, Lupus and Scleroderma. With you having ANA antibodies, an Immunologist would probably be the best place for you to start too.
    That's often quoted by doctors, in another forum I frequent with a couple of thousand gastroparesis contributors, it is not often found to be the case.
    https://www.inspire.com/ (The AGMD GI Motility Disorders group or G-PACT group for gastroparesis discussions)

    Conversely, a small proportion of those with viral onset have the situation in which individuals do not respond to any therapies and the course of their illness is a slow trend of deterioration over years or even decades which marks a clinical picture of an inflammatory/autoimmune neuropathy.
    http://www.digestivedistress.com/novel-rx
    I was tube feeding for six years, the feeding pump, given sets and the enteral formula was subsidised by QLD Health as a public hospital patient. I only had to pay about $30 per week, doesn't Victoria have anything similar.

    By the way, if you're looking for a good G.I. doctor in Melbourne who has a few clues about gastroparesis, Dr Geoff Hebbard at Royal Melbourne is recommended by several other Aussies on the Inspire forum where I also hang out. He has a private practice and a public clinic at Royal Melbourne.
     
  2. kangaSue

    kangaSue Senior Member

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    I found the guidelines for home enteral feeding here in QLD.
    https://www.health.qld.gov.au/directives/docs/gdl/qh-hsdgdl-030-2.pdf
    Take a copy of it with you to your local state government member and have a bitch about it to them. I have heard from others in NSW saying that they don't get a subsidy either.
     
  3. Megan17

    Megan17

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    KangaSue,

    I don't believe I have Adies pupils as no-one has ever said anything is sluggish or unequal with my pupils.

    Otherwise I was reading the Mayo AGIDE Laboratory site and it was a bit scary as it sounded like so many of the symptoms for AAG are what I have had. Can Gastroparesis improve a bit if one has that or is spontaneous improvement without meds unlikely (I do take Motilium but I mean other meds).

    The 30% risk of a neoplasm is particularly scary!
     
  4. Megan17

    Megan17

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    I've just read your Saturday message....it either wasn't showing up when I posted my previous message, or my brain fatigue is quite bad today!

    Interestingly I have been seeing Prof Geof Hebbard for about five years. He is awesome. Incredibly humble. Bulk bills even in his private practice. Knowledgeable but then IMHO by the time doctors become Professors and have a university chair they are pretty cluey. Most of my specialists are Professors (except my Endocrinologist) and they are a cut above the rest, except my endocrinologist and she is the one who recommended Prof Hebbard to me.

    I need to take some time to read and digest all that you have written. Brain definitely not good today. Thank you so much for all the info.
     
  5. Megan17

    Megan17

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    Oh something else! Is your gut motility terrible also? How does it work having a PEG when (if) your gut absorption/motility is poor.

    I'm sorry when I mentioned 'pump', I meant the gastric pacemaker. I was definitely having brain fag when I wrote that but I couldn't remember the name. I actually have a modified insulin pump (off label) for another condition I have, which administers hydrocortisone. So 'pump' was the first word I thought of.

    I have had to fight for the off label pump so I am used to pushing boundaries and also have learnt how to be diplomatic when dealing with doctors. Always asking a question not saying what I think! Sourcing and presenting peer reviewed research.

    Yeah I know, sometimes you get tired and can't advocate for yourself very well though! Probably why it took me so long to get retested for ANA's and ENA's.
     
  6. kangaSue

    kangaSue Senior Member

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    No I don't either, not everyone has every symptom that is listed.
    I have heard of isolated cases of gastroparesis getting better with having AAG when there was a rapid onset of symptoms but then there are others where gastroparesis improved only to have it return and g.i. dysfunction has become progressively worse to include episodes of small bowel pseudo-obstruction (sometimes becomes permanent), colonic inertia and pelvic floor dysfunction.

    I've been hanging around chronic g.i dysfunction forums for over 10 years and can't recall one instance of spontaneous improvement of GP with having had it for 5 years or more. Because I have great co-operation from my G.P. and I have also been diagnosed with intestinal ischemia (Non-occlusive Mesenteric Ischemia), I think I have tried a hell of a lot more meds than most (some off-label things like low dose naltrexone, allopurinol, dipyridamole and candersartan or more typical things like bethanechol, tegaserod, cisapride, prucalopride, pregabalin, just about every antidepressant under the sun, mestinon and steroids), none of which helped for more than a couple of weeks, if that long, before I always ended up no longer tolerating them.

    Nicorandil and Glyceryl Trinitrate patches (vasodilators), motillium and Creon digestive enzymes are still the only things that do much for me.
    Unfortunately that's the good news. The bad news is if you have a3-nAChR Ab as well as antineuronal nuclear antibody-type 1 (ANNA-1, anti-Hu) the risk of having small cell lung cancer goes up to 80% and as you have already found, a 23% chance of having gastroparesis or the more dramatic pseudo-obstruction. Believe me, you don't want to experience pseudo-obstruction, it is the most severe pain you will ever experience in your life and I say that from personal experience.

    I wasn't able to find any statistics on it when I went looking into my own chances of having a paraneoplastic syndrome from the g.i. dysfunction but I think the longer you have had any sort of chronic dysautonomia without a cancer being found, the less the chance is of it all actually being because of a hidden cancer.
    I'm pleased to hear that, good G.I. doctors are hard to find, one's knowledgeable in gastroparesis are even thinner on the ground.
    I would settle for terrible, mine is effing horrible. Went through a patch of recovery for a couple of years with nicorandil and GTN patches when I had to find some sort of solution because I stopped tolerating tube feeding but right now, I'm pretty much up shit creek again. The only things that don't give me a gut reaction are bread, cheese and eggs and red wine which helps a lot with the abdominal pain too when sipped over the course of a day. TPN makes me so crook with pain that I would rather starve to death than do that again.

    If my antibody tests come back negative from Mayo there are few options left for me.
    With gastroparesis, the idea is to bypass the stomach because food is not reaching the small bowel fast enough to sustain your needs, the absorption process then works as per normal. Sometimes the liquid formula can reflux back into the stomach, just depends on how things are moving downstream. They can do a PEG-type thing with an extension tube into the small bowel but I wouldn't recommend that. I have a fully formed stoma (roux-en-y feeding jejunostomy) so the feeding tube goes directly into the small bowel. Being a full (tiny) stoma, my tube is easily removable, the only down side is that I need to wear a small bag (just a little infant size one).
    Ah, right. I've got one of those too. That's a new saga, the battery is running low and just about done it's dash so I'm trying to get it replaced. I'm only one of two who has had it done and funded through the RBH and I'm waiting to hear if and when it will be replaced before it runs flat. I have a remote control to turn it off and on and there is definitely a marked difference with it off, nausea, vomiting, increased abdominal pain. I'm 99% sure that if I don't have it replaced, I won't be able to eat enough to sustain myself.
     
  7. Megan17

    Megan17

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    Thanks for your comprehensive reply. I have had a couple of busy days hence my delayed response.

    Just briefly I had an interesting conversation at my appointment today with my Endocrinologist. She is one of these doctors who looks at the 'whole' person in her management of her patients. After I showed her my ANA results and Anti Ro and AntiRo52 positive results, I mentioned about AAG. She immediately got online and read a bit about it and conceded that it would be worth following up.

    I will keep you appraised of any outcomes....and I'd certainly like to hear what your results turn out to be. You must be quite desperate for answers as you sound very sick!
     
    Valentijn likes this.
  8. kangaSue

    kangaSue Senior Member

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    An Endocrinologist was just another dead end. That was before I had any antibody tests, I thought they would get involved with that and I was quite surprised by their lack of interest when told there was nothing they had to offer in their field of specialty.

    Hopefully that will change if any tests come back positive from Mayo. If not, well, I'm sick, tired and sick and tired of it all and getting ever closer to throwing in the towel.
     
  9. Megan17

    Megan17

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    I'm sorry you feel so 'down'. I think many of us know the feeling of abandonment when it comes to clueless medical personnel. Sometimes you hit upon a gem....and in that respect I have been blessed. My Endo is very energetic and enthusiastic. During our consultation yesterday for example, she made four phone calls, three to other doctors (one was to Prof GH - you know who I mean, one to a paediatric professor in Sydney who has studied AAG, and another one to Medtronic to chase up on something for me). I was feeling sorry for the poor next patient. However she gives time to all her patients as they need it.

    My Pulmonologist is also amazing. He's the one who in Feb, said he was seeing an autoimmune pattern with various test results I had had done. His comment stimulated me to ask my (new and useful) GP to retest my ANA's and other Sjögrens related markers just a few weeks ago.

    The eight years since I got sick started with a lot of neurology and rheumatology appointments but without positive antibody markers they don't want to know you. First appointment they are quite interested. You then get the various tests done and their eyes glaze over at the second appointment. They then infer it's all in your head or give you a Fibromyalgia diagnosis.

    I guess I shouldn't be so hard on them, as they did all the correct tests but my stupid body was not co-operating with giving them the objective evidence they needed at that time.

    At least when my Gastroenterologist did all the tests they showed oesophageal dysmotility and the GES (gastric emptying studies etc) showed severe Gastroparesis. I then had a plan to manage that, along with ongoing GI appointments and dieticians.

    So apart from a 2012 appointment with the Opthamologist which pointed to Sjögren's (Schirmers 1mm L eye and 2 mm R) I have just lived with taking eye drops, Lyrica, Motilium, Tramadol etc) and not bothered with getting a firm diagnosis as I have been ppppp'd off with the whole process. Perhaps I should have been more proactive and asked my useless GP for the ANA's etc. Anyway that is water under the bridge now.

    I do hope you don't throw in the towel, as that can only mean one thing!!! :(:(:(
     
    Last edited: Apr 6, 2016
  10. kangaSue

    kangaSue Senior Member

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  11. Justin30

    Justin30 Senior Member

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    @Megan17 did your illness start with a flu or infectious trigger.

    Your symptoms sound very similar to mine. Did you ever have constant blurred vision or an inability to focus your vision when you first got sick?

    I am pretty disabled currently but did have autoimmune markers right from the get go.

    @kangaSue I know your from australia are they sending your labs to mayo from the hospital or general laboratory?

    Thanks,

    I hope both of you are feeling better.
     
  12. kangaSue

    kangaSue Senior Member

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    All the arrangements were handled by the hospital Pathology Dept.
     
    Justin30 likes this.
  13. Megan17

    Megan17

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    Justin, in 2006 I was diagnosed with a Mycoplasma Pnemoniae infection. Despite several courses of antibiotics (Doxycyclin) the cough persisted and the Myco.Pn. results kept coming back positive. After eight months of relentless coughing I went to the emergency department of my local hospital and was admitted for nine days very ill. It took about three months after discharge before I started to feel ok again.

    A few months later in about April 2007 I started to get some crippling gut pain episodes. The geographic tongue was becoming increasingly troublesome. Then in June I started to get strange sensations of burning, freezing and buzzing in my lower limbs.

    On the 3rd August 2007 I woke with a fever, extreme fatigue, heavy eyelids and many other symptoms. For the next four months the fatigue was so bad I could only really get out of bed to go to doctors appointments.....viz a viz neurologists x 2 and GP.

    So yes I did have an infectious event prior to the onset of this Sjögrens syndrome. To this day I believe that the prolonged unresolved Myco.Pn infection played a part in developing this autoimmune condition.

    Regarding the blurred vision. Yes I did (and still do) have blurred vision. However for me, although troubling, thankfully at no point have the eye and mouth symptoms to date, been the most troubling. The neurological ones have been the worst.

    Interestingly last week I had an appointment with my optometrist and he said that I had a large piece of 'mucous' /tissue floating in my vitreous fluid. He said it is quite normal to have varying sizes of these cells which adhere together. As it is in the vitreous fluid they cannot be removed so when the vision becomes very blurred it means it has floated into the line of sight. At those times one needs to shake or swivel the head or eyeballs and it should move. So far when it has happened since then I have tried it with reasonable success. Whether this is the complete answer to our type of blurred vision I'm not sure!

    Sorry to hear you are quite disabled Justin. Does that mean you have neurological (motor or sensory) symptoms too?
     
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  14. Justin30

    Justin30 Senior Member

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    A lot of twitching, blurred, vision, gi pain, POTS, weakness, numbness, tingling, spasms, weight loss, headaches, nystagmus and siezures. I do not have these symptoms all the time.
     
  15. Megan17

    Megan17

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    Very similar except I have never had the last three symptoms you mentioned - thankfully!

    The twitchings (fasciculations) were dreadful in the first two years. Probably about 30,000 per day. Now I only get the odd one or two.

    That's what mystifies me! Why do some symptoms resolve after awhile?
     
  16. Justin30

    Justin30 Senior Member

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    I dont get it.....mine change so often...or come and go....i have had very bad brain fog and gi problems the last couple weeks....less twtiching etc.....but really weak and bad vision too.....less POTS...

    You had POTS too right?
     
  17. Megan17

    Megan17

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    Yes. For quite some time I experienced the rapid heart rate which made me feel totally horrible. Drained of energy etc such that one wanted to just lie down.......which I guess was natures way of reducing the symptoms.

    After a doctor did the standing test (I haven't had a Tilt Table test) in 2010 when I came back positive for POTS, he prescribed the beta blocker Propranolol (low dose). Oh gosh what a difference it made!!!! It is still effective.

    However this is an example of symptoms being dealt with individually and doctors not looking at the total picture. In other words "Ok you have all these diverse symptoms let's look and see what they add up to".

    In my case I was tested for ANA's, Anti Ro and Anti La's within five days of becoming very unwell (2007) but they were negative then unfortunately. So probably that throws doctors off the scent and they think you are imagining it all. It's taken all these years, 'til 2016 to show positive markers.....not that they have been retested for a long time, so they could have been raised for years without me knowing. Grrrr!
     
  18. PDXhausted

    PDXhausted Senior Member

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    @Megan17 Hi Megan- do you find that your symptoms wax and wane at all with your menstrual cycle? Or are they completely independent of that?
     
  19. Megan17

    Megan17

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    I can't answer that PDXhausted as I had a hysterectomy a few years ago and therefore out of that loop now.

    I know that doing too much definitely affects me. For instance at the moment we are getting ready to go overseas for a wedding. Those kinds of things are stressful for me now. A thousand and one things to do but pushing ones self to get a modest list done each day in the lead up. A bit overwhelming really!
     
    PDXhausted likes this.
  20. Maria1

    Maria1 Silence speaks volumes

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    Hi @Megan17 and others on this thread

    I had my Schirmer's yesterday at the eye clinic. The doctor didn't actually bother measuring the result. He just laughed and said 'There you go, you can see there aren't many tears being produced there!' He was quite jovial. The end of the paper was just wet. He said he thought I have Sjogrens, based on eyes and my dry mouth. However I'm not sure he would be the person to diagnose. I'll wait to see what his letter to my GP says. I'm awaiting a rheumatologist referral.

    He offered to put in punctual plugs at the appointment yesterday, but I said I'd rather wait and see how I get on with the new drops. It was nice to see a doctor who listened and took my symptoms seriously and on face value (always feels so validating).

    I've been thinking back now just how long I've had dry eyes and dry mouth. It's a long time! It probably started when my migraines did, around the age of 30 (I'm 49 now). I keep thinking of the title of this thread 'probably Sjogrens all along'. In my case I've got a thyroid thing going on too, and I am wondering if ME was ever really part of the picture.

    My PEM has changed recently too. I seem to get migraines now if I do too much. When I was first ill with ?ME, I definitely has Classic PEM, it was what convinced me I had ME. Maybe I had ME for 3 years as part of the whole thing, that 3 year ME weird one...now it's back to Sjogrens and Hashimotos, possibly.

    I've been reading about Sjogrens and the need to exercise and balancing exercise and rest. I know long periods of inactivity don't suit me, but I can't overdo my activity either, again this makes me think I'm Sjogrens and not ME. But maybe I'm Sjogrens and ME and Hashis. As illnesses go, that doesn't seem too bad a list in some ways.

    How many people on here might have Sjogrens and not ME, or another, undiagnosed autoimmune disease I wonder? Quite a few seem to have ME along with other auto immune diseases and I wonder why keep the ME diagnosis, but that's for anther thread I think. Complicated...
     

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