Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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. Old Bones

    Old Bones Senior Member

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    A bit off-topic . . . My problem with dry eyes (so dry it is difficult to open them when I awaken at night) was diagnosed as blepharitis by an optometrist. It was probably an obvious diagnosis, since she was able to see the collarettes (crusting) at the base of my eyelashes. But, now I'm not so sure. Because, after two in-office treatments with her vigorously scrubbing the lash line with a rotating device dipped in a tea tree oil solution, and me consistently using warm compresses followed by more vigorous scrubbing with commercial eyelid wipes before bed, my eyes haven't improved. In almost two months, I only skipped this protocol once, and that night my eyes felt even worse than they did at diagnosis. The optometrist was pleased at follow-up by how much better my eyes looked -- small comfort, considering my unimproved symptoms.

    My Schirmer's test indicated eyes that were only slightly dry. But then, I don't have this problem during the daytime -- only at night. How long should I continue the blepharitis management protocol, without improvement, before considering the diagnosis may have been wrong? (I have other autoimmune diagnoses, but as far as I know, my tests for Sjogren's have been negative.)
     
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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I've had this done several times; it looks more barbaric than it actually feels. There was no pain involved at least for me anyway.
     
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  3. Andielyn

    Andielyn Senior Member

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    Interesting question. I can no longer seem to regulate my temperature especially during a crash. I am either chilling or sweating profusely. So for me it is both. Not diagnosed with SS, only EBV induced CFS/ME. I am also interested to know your experience @Megan17 ~Andielyn
     
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  4. Andielyn

    Andielyn Senior Member

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    @Amaya2014 My PEM "crashes" are similar to yours except the emotional piece usually comes as I'm coming out of it or am out of it. During the crash I am too exhausted to even exude that much emotion. I am almost always blindsided by my crashes.
     
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  5. Amaya2014

    Amaya2014 Senior Member

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    Yes I feel blunted in emotions most of the time and I know part of it is because I realized that I didn't have the energy to get too excited or too sad or even too angry. So many times I've wanted to throw or break something out of frustration but I can't afford the energy expenditure (plus the eventual clean up :eek:). But when I'm crashing the tears will spill hot and frustrated. I too am blindsided with a crash if it comes...so far I know of nothing to stop it. I like to think that I've gotten perceptive to know when I'm getting close because I get more sensitive to light, start moving slower, and decreased cognitive abilities.
    My illness started early 2014. Perhaps something will change...
     
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  6. Megan17

    Megan17

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    Marco until six months ago I never sweated/perspired, then about Oct 2015 I started to sweat profusely. Literally dripping off me continuously. I needed to take towels with me when I went out. I had been puzzled by this then I realised a few weeks ago that this was possibly just another autonomic symptom as you suggest.

    My autonomic system has taken a hit with this autoimmune thing! Things like balance has been affected, orthostatic tachycardia and GI functioning which virtually ceased. So it's not unreasonable to believe that temperature control could be affected.

    It is interesting because generally I am not getting 'new' symptoms yet this one appeared out of the blue in October.

    To look at this objectively though, I had one medication added to my arsenal about that time and that is longterm Azithromycin for persistent Mycoplasma Pn. I have had longterm Azithromycin previously though when I had Myco.Pn. before (back in 2008) but did not have any sweating, so not sure that is the cause.

    Another interesting thing I have found since all of my symptoms started in 2007, is that I get very cold around 4:30/5pm in the afternoons. I usually have to go and put on an extra pullover. It's horrible and at the same time I slump....not as bad as PEM but an overwhelming fatigue nevertheless. It's usually when I am trying to get dinner ready so I forge/blunder on. However the strange thing is that by 7pm I am 'right as rain'. Fatigue gone. Pullover taken off! This is a pattern that does not happen at any other time of the day.

    When I remember I take L-acetyl Carnitine and it does help fairly quickly. Also lying down on the sofa for a short while with legs elevated helps me to get up and get going. Otherwise I'm mystified!
     
    Last edited: Mar 30, 2016
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  7. Megan17

    Megan17

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    Thank you Charles for the information you posted. As I think I have mentioned to someone else, I have a Rheumatology appointment scheduled for 19th May. I am also on a cancellation list in the event an earlier time slot comes up. Hopefully this Rheumatologist is 'on the ball'.

    I see my Endocrinologist next week. She hasn't actually demeaned my symptoms exactly (like my previous endo did....so I left him) but I think she has been unconvinced that I have been as unwell as I have. When she greets me she always says in an upbeat voice "you look well" and I smile back and say "thank you" but inside I am thinking if only you knew how I feel. By the end of our consultations my voice is hoarse and I am flagging +++.

    It will be interesting to see what she says when I show her the antibody results. Will keep you informed.
     
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  8. kangaSue

    kangaSue Senior Member

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    Autoimmune Autonomic Ganglionopathy (AAG) also features changes in the pattern of temperature regulation or sweating (either reduced or greatly increased) and has a large overlap of symptoms with Sjogren's Syndrome.

    I'm lead to believe that AAG doesn't usually have chronic fatigue or PEM as a symptom but it's interesting to note that a good percent of people testing negative for AAG invariably get diagnosed with Sjogren's Syndrome instead.

    Symptoms of AAG can include POTS or OH, chronic g.i. dysfunction or constipation, dry mouth, dry eyes and sweating abnormalities. It's had a raft of other names including acute pandysautonomia, autoimmune autonomic neuropathy and idiopathic subacute autonomic neuropathy. There is a recent newly described entity called Autoimmune Gastrointestinal Dysmotility that is a restricted form of AAG, i.e., a lower titre of antibodies is found.

    AAG is usually sub-acute in presentation but as with Sjogren's, it can be a chronic slow developing thing with up to ten years for all autonomic symptoms to show.
    http://www.dysautonomiainternational.org/page.php?ID=124
     
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  9. Megan17

    Megan17

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    That is definitely depressing news Jonathan!

    At least I have had good diagnostics and treatment for the individual symptoms which make up the whole....like Gastroparesis - motility testing (GES) and then treatment with prokinetics etc. Pulmonary symptoms - great diagnostics and under a very good Pulmonologist (who is a lung transplant surgeon). He is amazing. My neuropathic, muscle and joint pain has been managed well with Lyrica and Tramadol. I'd rather not take them at all but it makes life tolerable. I can be involved in life and the negative impact of my malady upon the family is minimised. Consequently I think they often forget that I am struggling.

    Fatigue is probably one symptom which is harder to both 'hide' and treat. Now that my P.E.M had abated (fingers crossed) a level of fatigue is always there but not as crippling as it was......but equally not easy to find solutions for. Acetyl-L-Carnitine has helped me significantly for fatigue when I remember to use it.
     
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  10. Megan17

    Megan17

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    KangaSue

    I'll read that link this evening. Can you tell me what antibodies are positive in AAG?
     
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  11. kangaSue

    kangaSue Senior Member

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    Cation channel antibodies as per the Mayo Autoimmune Gastrointestinal Dysmotility evaluation are the main ones. Ganglionic neuronal acetylcholine receptor antibodies (a3-nAChR Ab) are found in about 50% of cases but N-type and P/Q-type calcium channel and neuronal voltage-gated potassium channel crop up too. This panel is used for both AAG and AGID.
    http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/89886

    Sometimes they use the Mayo PAVAL panel too if they suspect a sudden onset is the precursor of a hidden cancer
     
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  12. kangaSue

    kangaSue Senior Member

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  13. Andielyn

    Andielyn Senior Member

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    Been thinking about this. I also feel like I have the flu...body aches, chills, brain fog, used to get a sore throat but not so much now after being on antivirals for several months.
     
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  14. Amaya2014

    Amaya2014 Senior Member

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    @Andielyn That's me today. I'm noticing that this happens after I've been doing too much but not completely exhausted. I'm struggling today (feeling sick and weak) but I kind of expected it because the past three days I was out of the house for 2-3 hrs at a time. I could barely get out of the bed today and haven't got much done other than staying close to the bathroom...sorry for the grossness.
    My treatment so far has been for pain, vertigo, sleep, and fatigue. I've been trying to make a case for antivirals (I'm EBV positive) or something else but without success. What are you on and did you have to convince your dr (if so..how?)
    Feel like I'm getting off topic. Maybe I should message you or there's a better place for this conversation?
     
    Last edited: Mar 31, 2016
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  15. jimells

    jimells Senior Member

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    I have this problem. It may be related to over-stimulated adrenergic receptors. If the Raynauds Syndrome kicks up or my hands/feet start sweating I can diminish the symptoms with a small dose of an adrenergic alpha receptor blocker, like trazodone. If I am feeling hot all over, another tiny dose of beta blocker seems to help.

    It would be interesting to know what is agonizing these receptors. Certainly the elevated norepinephrine associated with hyperadrenergic POTS is involved, but is it the whole story? If I have the adrenergic auto-antibodies found by Fluge and Mella, that would explain a lot.

    http://www.ncbi.nlm.nih.gov/pubmed/26399744
     
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  16. kangaSue

    kangaSue Senior Member

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    It's interesting that you get improvement with L-acetyl Carnitine, it being a precursor to acetylcholine, and Autoimmune Autonomic Ganglionopathy is a disorder defined most commonly by antibodies to the nicotonic acetylcholine receptor of the autonomic ganglia.

    I was forgetting that you can also develop Autoimmune Autonomic Ganglionopathy in conjunction with having Sjogren's Syndrome so it's definitely an antibody (a3-nAChR Ab) that should be tested for with Sjogren's, in the main because the vagus nerve is a nicotinic acetylcholine receptor so this antibody can interfere with any of the functions involved with vagus nerve signalling such as sweat response, cardiac regulation and gastric motility.

    Mestinon (pyridostigmine), one of the treatment options for AAG, prevents the breakdown of acetylcholine, the same as it does in Myasthenia Gravis.

    https://www.researchgate.net/public...ne_receptor_antibody_and_therapeutic_approach
    I have had severe gastroparesis for 16 years along with low blood presssure. It was narrowed down to being Ischemic Gastroparesis because of insufficient blood flow to bowel through the mesentery arteries from a non-occlusive cause, probably from spasm in the mesentery microvacular network and which can cause severe abdominal pain from the resulting intestinal ischemia (usually indicated by abdominal pain about 1/2 an hour after eating).

    Prokinetics do help (domperidone) but the greatest benefit I had was with nitrate peripheral artery vasodilators (nicorandil primarily and glyceryl trinitrate patches) which counter-intuitively raise my blood pressure and enabled me to stop tube feeding and return to a limited oral diet.

    The g.i. dysfunction has still been progressive though with developing small bowel pseudo-obstruction and then sweat abnormalities in the last couple of years which can be indicative of slowly progressive AAG, having recently ruled out Sjogren's, Scleroderma and Lupus. I'm just waiting on the antibody results from Mayo (AGIDE panel) to confirm it as my doctors here in Australia won't offer any of the major treatments (IVIG, Plasmapheresis, Ritux maybe) on symptoms alone, despite the correlation with clinical papers suggestive of symptomatic AAG either way.
     
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  17. Megan17

    Megan17

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    KangaSue.
    How would you ever get any doctor to test for this? It seems so obscure. What specialty of medicine would be most familiar with and likely to acknowledge that a3-nAChR Ab is worth testing for? I will do some reading on it. Sigh!! Can my cognitively impaired brain get my head around another thing?

    Asking for such a test requires a level of diplomacy as it is easy for these specialists to get huffy with us mere mortal patients when we ask for something, regardless of whether they are familiar with the discussion point or not! Any suggestions on how to do this diplomatically would be greatfully received!!

    Acetyl-L-Carnitine has been singularly the most helpful supplement that I have used this past eight years. I get the powder as it seems to absorb more quickly. I dissolve it in either V8 or tomato juice as it is a very acidic product. It's expensive (I get the Musashi brand) so just another drain on dwindling resources when one can't work!

    My Gastroparesis was severe for five years and because the GI specialist managing me said that if the paralysis is due to a 'virus' it may improve or disappear by two years. Well two years came and went but no change. I remained on a liquid diet soups/smoothies/juices with the exception of white fish and white rice which I could eat, albeit in tiny amounts. Initially my Gastroenterologist mentioned the pump as an option, but the cost was insane with no guarantee that Medicare would cover it. So I just adapted to a different way of 'eating'. The prokinetics (Domperidone) helped a lot and I am still on these. About 18 months ago I noticed I was able to eat a bit more and now I can eat quite a range of things. I still fill up very quickly though.

    Even though my stomach has shown some improvement my gut is way behind. Gastroparesis is a horrible thing on several levels and I am overjoyed that I am experiencing a measure of improvement.

    I will read the links you sent and explore this topic a bit more! Thanks KangaSue!
     
  18. kangaSue

    kangaSue Senior Member

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    @Megan17, Can I ask what part of the world you are from before I give you an answer, are you in Australia?
     
  19. Megan17

    Megan17

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    Yes KangaSue, I am in Melbourne.
     
  20. kangaSue

    kangaSue Senior Member

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    Ah good, my experience here in Brisvegas should be valid for you too. Will get back to you over the weekend.
     

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