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.
I got low Vit D, cortisol, iron. Failed Romberg test after 2 seconds.
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.
extreme sensitivity to light
Yes
Yes.. thou I only had vertigo once.. I floored me thou and I would of thrown up if it hadnt stopped quickly.
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.
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.
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.
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.
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.
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.
I also have widespread flu like aching for years, migrating joint pain,
Yes
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
Yes to all that. myoclonus etc.. but my seizures seem to consist of just jerking and blank outs.
My illness was slow onset. There were periods of partial remission initially, until the thing became permanent.
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..
Me personally, I have severe allergies (had shots for 5 years), environmental sensitivities (MCS?), PMLE (sun allergy), heart palpitations (unheard by a doctor so no diagnosis!),
yes
. 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.
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.
My asthma is much worse since last year, despite all tests being OK
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.