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Do you have positive ANA speckled pattern?

Discussion in 'General Symptoms' started by Strawberry, Feb 23, 2015.

  1. Strawberry

    Strawberry Senior Member

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    If so, what definite diagnoses have you had? I know that the ANA speckled pattern is one of Jonathan Edwards separate groups, with no identifiable (or slow) onset. I know I seem very different than most people here, who can tell you the exact day their illness started. I can't. So I was wondering who is in my boat? And what symptoms do you have?

    Me personally, I have severe allergies (had shots for 5 years), environmental sensitivities (MCS?), PMLE (sun allergy), heart murmur (untreated as not needed), heart palpitations (unheard by a doctor so no diagnosis!), and have always been told my blood oxygen levels are low. That is all. No one knows why I have had muscle fatigue for 25 years, and sore throat and flu ache for 20. Nor do they know why I have odd neurological symptoms that come and go. I used to have GERD (negative h. pylori) but I was able to get that under control with a wheat free diet, probiotics, and digestive enzyme pills. I no longer need nexium or anything.

    Oh, I also have "geographic tongue", which started about 20 years ago, coinciding with when my lovely EX husband gave me HPV, and the sore throats and flu ache started. Although every doctor and dentist insist they aren't connected...

    Sorry if this is in the wrong forum, I couldn't find anywhere that it fit.

    I don't mind hearing other stories that are similar to mine, but I do somewhat want to leave this thread to responses from positive ANA speckled pattern people...
     
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  2. green_monster

    green_monster

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    Hi Strawberry,

    A few things you mention are familiar to me. My illness was slow onset. There were periods of partial remission initially, until the thing became permanent. I'm a bit reluctant to say too much as I kind of want to stay anonymous. My current doctors are fantastic, but previously I wasn't treated too well. I've had doctors throw a telephone at me, kick my chair, tell lies about me to other doctors, stuff like that.

    I have positive ANA speckled pattern, GERD (negative h. pylori), geographic tongue, permanent sore throat. A specialist found the ANA and didn't really know what to make of it. It didn't necessarily fit with the arthritis condition I have. A lot of my symptoms didn't fit with the arthritis, so this specialist sent me to doctor who fully understands ME and that's how I finally got my ME diagnosis. In hindsight I could have been diagnosed 10 years earlier if I had seen the right doctor. Unfortunately for all those years as I was slowly getting worse I was given all the usual psychobabble and had telephones thrown at me.

    I do have a strange thing going on that baffles everyone. Certain abdominal muscles twitch in time with my heartbeat. The doctor who saw and felt this said it wasn't in any medical textbooks. If anybody out there, especially a doctor, can explain why my muscles do this I would most interested. I do have orthostatic intolerance, and a few intestinal issues, but nothing explains the muscle thing.

    One other thing that has never been explained is my veins sometimes bulge out like the incredible hulk. Sometimes it's painless, sometimes it is agony. I have been told that the ANA speckled is possibly connected to this vascular problem, but that was just informed speculation. The doctors just don't know what is going on. There are dozens of vascular diseases and dozens of diseases where ANA shows up. All I was told is that ANA sometimes shows up in inflammatory vascular disease, and that ANA sometimes shows up in ME. I do also have blatant inflammation of some of the tiniest blood vessels, but nobody would investigate this. Not yet anyway.

    There has just been a paper published that really caught my attention, a new finding regarding bulging arteries and an herpes virus-

    Maria A. Nagel et al. Prevalence and distribution of VZV in temporal arteries of patients with giant cell arteritis. Neurology, February 2015 DOI:10.1212/WNL.0000000000001409 1526-632X

    Varicella zoster (chickpox) virus found on biopsy in 74% of people with Giant cell arteritis, 8% of controls.

    Perhaps this will turn out to be another illness where a herpes family virus is involved. Whether it has any relevance to ME is another question, but I'm curious. I do believe that Jose Montoya, and Fluge and Mella have expressed an interest in looking at the endothelium in ME. Endothelium is the cells that line the interior surface of blood vessels and lymphatic vessels. I wonder if they will be looking for viruses?

    So I too would be interested to hear about other PWME who are ANA speckled positive. I'm really glad you brought this subject up, Strawberry.
     
  3. justy

    justy Senior Member

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    I had a low titre positive ANA speckled pattern turn up last year when I went abroad for testing. Unfortunately the NHS have not been able to replicate this and wont accept the 'foreign' result - even though my blood was tested at a major lab in a large European city.

    I also had slow or at least not definite onset. I had a long remission to near normal for about 9 years before a severe relapse 7 years ago that I have never recovered from, just keep getting wporse.

    I have severe GERD, no H Pylori, at the moment back on PPI for this twice daily. I also have allergies and now worsening MCS as well. My asthma is much worse since last year, despite all tests being OK.

    I have developed body wide 24 hr a day itching sicne last Nov after an allergic reaction to Doxycyline and now on anti histamines every day (although a normal dose is not enough). Seeing an a private clinic tomorrow and wondering about Mast Cell/histamine issues. I also have a terrible immune system (mostly life long) and catch everything going - I never have a normal reaction to flus colds etc. I get ill very slowly and never get a temeperature, then am ill for weeks and weeks and can take months to recover - although since one last summer I haven't recovered back to the level before. Unlike many here, I don't feel better when ill at all.

    I have been diagnosed with chornic chlmaydia pneumponaie and Bartonella by KDM, but unable to take antibioitxs to treat due to the itching issue (every time I try to intoroduce a new drug, even a painkiller it gets worse)

    edit: I also have widespread flu like aching for years, migrating joint pain, and some inflammatory symptoms such as inflammatory anal pain, lymph nodes on neck etc - these got much better on steroids, although I felt worse in myself! I also have a lot of neuro symptoms - especially word retrieval problems and saying the worng, but similar word - do this all the time. I have headaches, eye pain and myoclonus, and KDM thinks I may be having seizures as I experience weird daydreaming and then my brain feels like its moving (weird I know)
     
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  4. Sidereal

    Sidereal Senior Member

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    I have a high ANA titre but it's homogeneous pattern. Tested at three different university hospitals.
     
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  5. green_monster

    green_monster

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    Interesting, Justy. I've just developed what has been diagnosed as an allergy, which started literally overnight. I have never had any allergies previously. It affects my eyes and makes my skin itch everywhere. I haven't had any testing done, so it might not actually be an allergy, but the doc says it is.

    I have bad cognitive problems especially concerning speech. I am writing lots here but I couldn't speak this much. My brain would explode. Sometimes I can't speak at all, but I can write a message on a piece of paper.

    I get pain behind my eyes, balance problems, tinnitus, hearing loss, constant mild headache. I also get really severe head pain sometimes when I rest my head on the pillow. It isn't an headache, it's a painful head. I get swollen lymph nodes. I also get anal pain and bleeding. Colonoscopy and biopsy found an overgrowth of an unknown spirochete bacteria in my large intestine, but the significance of this is unknown.

    Once I had a severe sudden pain in my head. It was so bad I vomited and passed out at the same time. It was unbearable. It affected my vision. I couldn't see properly, everything looked dull, but at the same time everything had a bright shiny silver appearance. Really strange stuff. An hour later I felt almost normal, tiny headache remained, but my blood pressure was extremely low. The doctor said it was nothing, probably just 'stress', and gave me antidepressants! A doctor later described this to me as a 'micro stroke' or a 'micro seizure', and was aghast that the original doctor just fobbed me off with 'stress'. Oh well.

    It's a shame the NHS won't accept your overseas ANA result, Justy. I have had a mixture of negative and positive ANA results. They bounce around for no obvious reason. I was lucky in that an NHS specialist accepted all my various overseas results without question, and even wrote to my overseas doctor to keep them updated. Luck of the draw I guess. Some doctors are dangerous, some doctors are brilliant. I hope you get something positive out of your upcoming appointment, Justy. All the best.
     
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  6. justy

    justy Senior Member

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    Hey @green_monster , your symptoms sound very similar to mine! although without the nasty seizure experience. I also get head pain when I lay down - almost like the pillow hurts my head. The past year I have had large body jerks, which my GP saw and said 'that's not right for M.E, have you seen a neurologist?' I haven't, but she wont refer me until ive seen the rheumatologist (ive been waiting 27 months so far...)

    This comes and goes, some days very bad, others not noticeable. A few years ago I had right eye pain so severe I felt sick. it lasted about 3 months and my eye was very painful to touch (the lid) and I had floaters, flashes and blurred vision at the time. No doctor is interested in my weird ever-changing symptoms- well no NHS doctor.

    And yet theoretically if we fail ANY test then we can't have M.E/CFS according to the NICE guidelines.
    I now have on NHS testing:
    Persistently low ferritin at around 5 for 7 years, iron deficiency anaemia comes and goes.
    Mean corpuscular haemoglobin -low
    Red blood cell distribution width - High
    IGE - high (but only in the low hundreds)
    IGM - high.
    Equivocal Rhomberg (so not sure).

    No interest to sort out these issues.

    Private testing:
    Vitamin D - low (very) NHS lab refused test.
    positive ANA speckled pattern
    Positive Chlamydia pneumonia IGG
    Positive Bartonella titres.
    High IL8
    High NK cells expression (perforin)
    Very high PEG2
    Low CD57
    TSH - 3.69 so not out of range, but a bit high by some standards.
    Cortisol dips in and out of normal on saliva test over 24 hrs - when it drops it really drops way too low.
    DHEA - low
     
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  7. green_monster

    green_monster

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    If anyone is interested in seeing the mind boggling complexity of ANA patterns, check this out-

    http://www.palpath.com/MedicalTestPages/Table_anatable.htm

    There must be something like 30 or 40 different patterns, with all kinds of overlaps between many illnesses. There are about a dozen different speckled types that can be observed. I haven't a clue which particular speckled type I have, I just know it is one of them. It was explained to me that labs normally use automated machines, and they give relatively coarse results. If a human looks at the patterns they can see all these many different weird and wonderful things, that machines can't discriminate.
     
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  8. Hanna

    Hanna Senior Member

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    I had mixed positive ANA : homogeneous and speckled in 2002. My ME started all at once end june 1998.
    I havn't been explained what does it mean.
    Now ANA still positive (2), but no further mention.
     
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  9. melamine

    melamine Senior Member

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    My ANA turned positive speckle pattern in 2010 and has remained at the level it was then. This was about 5-8 years after declining health in which many new symptoms developed and previous ones became much worse. I had also experienced 2 more severe infections by that time that were atypical in presentation, and a tremendous amount of chronic/acute doctor-associated stress.

    Prior to outpatient surgery in 1997 I had achieved a certain level of stability after 12 years of chronic post-viral-post-encephalitis, but new symptoms showed up immediately following it and from 2000 on, many more new symptoms began. At the same time, existing ones worsened significantly. There is a possibility of dental metal having had something to do with declining health after that time.

    I have a Dx of mixed connective tissue disease now, but I consider it secondary to post-encephalitis/ME. Also have significant history of dental mercury exposure (in addition to metal mentioned previously). I don't have typical allergies for the most part - mostly topical - but became hyper-sensitive to excitotoxic effects of glutamic acid by 2007 and probably earlier. One of the atypical allergies I have is to cold.
     
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  10. green_monster

    green_monster

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    Hi Justy, your symptoms and results sound similar to mine as well!

    I think I've got less blood results than you, as I have had less immune system stuff tested. I'm in no rush.

    I got low Vit D, cortisol, iron. Failed Romberg test after 2 seconds. There are some more but I don't have them to hand.

    I have had various eye problems, floaters, chronic conjunctivitis, extreme sensitivity to light.

    I get those body jerks as I'm falling asleep. It's like my entire body got an electric shock. I also have 'exploding head syndrome', which also happens as I fall asleep. Ever heard of that one? Exploding head. It's like listening to a very loud explosion going off, except the sound is generated inside the head somehow.

    My doctors haven't recommended that I see a neurologist, even though I have many problems. The doctor I see regarding ME is an expert, and right now they haven't mentioned anything about neurologists. I have had brain MRI and PET scans, so there has been an honest attempt to look into these neuro issues. I guess right now the assumption is that the neurological things are part of the ME, and unless something changes I'm happy with that.

    It's a scandal that you have been waiting 27 months to see a rheumatologist. I haven't been in Britain for a while so I don't know if things in the NHS have gotten worse, but it sure sounds like they have. If I look back on my illness, which is like watching a slow motion automobile wreck, the people who did most for me were rheumatologists. They always paid attention to everything that was going wrong. It was actually a rheumatologist that finally sent me to the ME doctor. With your complaints of migrating joint pain and swollen lymph nodes I would imagine that an appointment with a rheumatologist would be perfectly reasonable and they should give you one.

    I hope things go well for you Justy, and I do hope you get that Rheumatologist appointment.
     
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  11. Strawberry

    Strawberry Senior Member

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    Wow, @justy and @green_monster , I feel like there is a parrot in the room! Nice to hear from others that have symptoms so much closer to mine. All except the head pain/exploding head thing. Although I do get migraine... I also haven't had a seizure, but they have checked me for seizure.

    Just trying to scan through quickly, I do have vertigo, balance issues, tinnitus. I have floaters/ black spots in my eyes. I also have the speech problems, thankfully most people around me know how to "fill in the blanks". I get chronic infection that the doctor doesn't even treat for anymore. Although I rarely get sick. And when I get sick, I am never as sick as the person that I caught the bug from.

    It makes me wonder, are we really more similar to each other, or is it like astrology charts? Just enough information that you identify with to make it sound like you? Hopefully medical science will figure that out in our lifetimes!
     
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  12. AndyPandy

    AndyPandy Making the most of it

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    I have positive ANA levels rising over time with speckled pattern. Too tired to write more just now.
     
  13. green_monster

    green_monster

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    Hi Strawberry, good point about astrology charts and selectively comparing information. That could very well be happening here! It's interesting that similar symptoms and problems do keep coming up. I was told that what is happening to me isn't anything unique or special, and that many people with slow-onset illness have similar things going on. Roll on the hard science to give us the answers. Take care.
     
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  14. taniaaust1

    taniaaust1

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    I only recently found out one of my was speckled (thou not high). I never got to go back to that doctor so never had follow up done on this... I would of loved to have known what the speckled pattern of my test was indicating, apparently they can look further at these.

    I match with Justy's and green monsters posts a lot. I have one oppositie abnormality which I dont match with with Justy's post is I have abnormally low IGE and not high like she does.

    I'll say yes to the things Ive had in common.
    Yes to all those things except it was my iron ferritin which was low ..at anemic level and I failed the Rombergs instantly. I went down so fast that the neurologists both missed grabbing me.

    Yes

    Yes.. thou I only had vertigo once.. I floored me thou and I would of thrown up if it hadnt stopped quickly.

    I thou was getting body jerks severly both day and night, like electric shocks. I once got thrown off my lounge chair as I got a big one one day while watching TV.

    The exploding head syndrome, Ive only had once (that one is frightening.. like a gun going off in my head), about a couple of years ago but I dont think it was related to the ME, I was doing lucid dreaming at that point of time and people into that are more likely to get it.

    Itchiness happened to me too and it was all over. I think I had Morgellon's (that can happen with ME/CFS.. if you chat to ones with Morgellon's you'll find they have many other symptoms too). My itchiness got so severe that it was really unbearable (it wasnt allergy related in my case). I ended having to sleep each night in a salt (1kg salt) and bicarbonate soda bath (250g) or otherwise I couldnt sleep due to it. I had constant severe itchness probably for about 2 years.

    Yes I was using simple sign language instead of speech when I was at my worst. I used to get pain both throu my eyes and behind my eyes and all the rest you listed to except the tinnitus and the hearing loss which I dont get.

    Yes

    Yes to all that. myoclonus etc.. but my seizures seem to consist of just jerking and blank outs.

    My illness was slow onset but sudden and i also for first year had a lot of full remissions between bouts of crashes. It interests me that so many of us on this thread are mentioning partial or full remissions..

    yes

    Yes to all that. I had my first normal like severe allergic reaction last year where my mouth swelled up after I ate something. I have an epi-pen now, before that I just had MCS (thou I can also collapse from chemicals). Heart palpitations can be caused by POTS, I have POTS. My ME has been very viral like eg sore throat, swollen glands, fevers, muscle pain etc

    GERD.. interesting that I think we all mentioned GERD. Im another who had GERD with this, I was on prescription drugs to treat it. Im now free of it as it turned out my GERD was due to me having hyperinsulinemia.. so now I dont get it due to a very low carb diet.

    Same here with asthma getting worst. My asthma flares whenever I get a ME crash.


    I'd like to say this manifestion of my ME I used to have is very much changed now and Im not getting lots of things I used to thou some I still do.. particually the allergy issues and asthma getting worst.

    If you all here are representive of the speckled ANA subgroup, I guess I could say I have fit with this subgroup well. Note thou.. Ive only once had the speckled ANA on my test and that was about 3 years ago now. (Ive probably had at least 10 other testsof it over the 17 years Ive been sick showing as normal). Ive had I think??? umm or maybe not.. Im not sure, maybe one? ANA since the speckled one showing up normal.
     
    Last edited: Feb 25, 2015
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  15. taniaaust1

    taniaaust1

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    I know this is a low sample of us with the speckled but if I had to summarise the other findings which seem to go with speckled with 3 things I'd say.

    - Allergic/MCS, low cortisol, GERD

    followed by maybe slow onset, eye pain, sore throat
    ...........

    I missed a couple of things before

    One of my specialists has given me that diagnoses too.

    That has happened to me 3 times now but it wasnt painful. When its happened the veins have really badly bulged out of the top of my hands (actually I think they were more proiminent under on the inside of my arms too). Its very very strange when it occurs, very abnormal. I wish I'd taken a photo of it. In my case thou I havent found it painful.

    That's a more recent coming in symptom for me and only happened after I'd had ME for 15 years.

    @green_monster .. is this a symptom which you got later in your ME? I'd be interested to know how long you were sick for before this happened?
     
    Last edited: Feb 25, 2015
  16. Strawberry

    Strawberry Senior Member

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    Andy, I hope you get feeling well soon! No worries on my part, I will try to remember to watch your posts for your symptoms.
     
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  17. Strawberry

    Strawberry Senior Member

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    I also wonder if this is more different than the rest here that are ANA negative? I hate tagging this because he must be in so much demand, but I do wonder what @Jonathan Edwards can input? Dr Edwards, you did put ANA speckled pattern people in our own group, can you shed any light?

    Also back to taniaaust1, I can't remember for sure, but I think my cortisol levels were normal. I know my hormones are at a level much younger than my age, I'm not pre menopausal. Is cortisol one of those?
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member

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    People with speckled ANA as part of lupus or something near lupus have a lot of fatigue and may have pains that are hard to pin down to specific arthritis. The Sjogren's antibodies fall into this pattern. Muscle may also be inflamed. There may be Raynaud's phenomenon.
     
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  19. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I have speckled +ANA rising over time to a high titre level.

    I had sudden onset which was associated to an infection (apparently viral).

    From an office exam, one would think I had scleroderma or Lupus, Crohn's, or multiple sclerosis (depending on their expertise), but I test negative for such things (I do have spots on my MRI but not what's expected for MS, and abnormal findings on endoscopy but nothing diagnostic there, either).

    I had a very sore throat early on, but it doesn't bother me so much most of the time now, though it may get more sore during PEM or a crash.

    I have a bit low body temp but my cortisol and thyroid are fine. I have trouble running a fever.

    Have muscle fatiguability/weakness; cognitive problems; post-exertional malaise peaking at 24 hours or on the 2nd or 3rd day (flulike feeling, weakness, dyspnea, increase in sensitivity to noise and light, increased brain fog, etc.); more frequent and severe migraines than previously; and so on and so on.
     
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  20. Strawberry

    Strawberry Senior Member

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    I have also been tested for all of those, and have the spots on the MRI that aren't quite right for MS...

    Interesting you are sudden onset.
     
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