Has anyone had similar symptoms?

[gazaeee]

Hi lovely people

Has anyone here experienced similar symptoms to the following:

Started to feel a little unwell and then a rapid feeling of warmth on my skin (head and torso) followed by moderate sweating on the head and back. I felt a little weak and dizzy and slight nauseous. Felt cold for a short while after but the feeling unwell and not being quite right lasted for just over an hour. This is the 3rd time its happened this week. An observation that I'm not sure has any relevance is that my finger nails seemed quite purple which I have been having a bit lately. My oximeter showed a normal O2 saturation level of 97%.

Dr on 111 asked if I had palpitations, vomited, pain in the chest. Stroke symptoms, blood in the stools or shortness of breath.. but nothing of those presented (I do feel short of breath every now and then but not around the time of this happening). I also checked my blood pressure, pulse and blood sugar which were normal.

Dr said it could be some sort of tummy virus that messing around with the Vegas nerve which can cause a whole host of weird symptoms. Outside of the event I feel relatively fine so I'm not sure I'm convinced. Dr suggested I get my GP to give me a heart monitor but I just think something else is going on.

I've had 2 positives (8 months apart - first while on Apixaban and second while on Warfarin) for LAC and 1 weakly positive for SLE but as yet no formal diagnosis.

I'm inclined to wonder if it is something to do with:

Low INR

Something I am eating/not eating

APS or SLE messing with my digestive or nervous system

Currently trialling a Gluten Free diet, next will be dairy and after that will target specific foods.

Even though I've not been formally diagnosed, I have had a clotting event, seem to increasingly be getting pain in my fingers and toes and since 5 months ago, my vision is slower to refocus and close work more blurry.

[MaryF Administrator]

I am glad your GP is is keeping an eye, do take photographs of any strange physical symptoms that are visible, and keep a diary of symptoms, and be aware that some of us end up with POTS. It can take a while for a diagnosis, worth looking into:

potsuk.org/temperature_regu....

Also in some people B12 deficiency can cause funny temperatures and also dizziness and funny heart beats, best to get it all checked out. I hope you get to the bottom of it with your GP practice or specialist. MaryF

[gazaeee in reply to MaryF]

Thanks Mary the Pots site looks really good.

Actually the over the phone 111 service Dr was more helpful than my GP.

I'm not under a Rheumy but the Haematologists at the hospital where I've had a few appointments haven't been very helpful at all.

Been meaning to get a referral to a recommended unit with APS specialists but for every decent review, someone has said something very off-putting about their experience. On top of that, the large London units I heard more recently are rejecting referrals from people not living in London. Currently looking into Royal United Bath which has had a few good reviews.

[MaryF Administrator in reply to gazaeee]

ghicworld.org/ghic-consulta... MaryF

[Lure2]

Before I was anticoagulated (Warfarin) with the correct therapeutic level of INR (around 4.0) I for a rather long time had some sort of short feeling of sudden "coldness" running through my body for some minutes. At that time I also had very high bloodpressure and I think those cold feelings were microembolies (PEs) as I now later on have Pulmonary Hypertension. I have not had it after the correct level (the level can be important) of INR. I selftest today so I know when I am too low in INR and then take a Fragminshot.

So therefor I suggest "Low INR". So much with this illness has to do with our thick blood actually. Get a Specialist of autoimmun illnesses and get a diagnose. You have been twice positive with LAC.

[gazaeee in reply to Lure2]

Thanks Lure,

Yes 2 LAC positives and 1 SLE weakly positive. I had a clot in my calf, one in the thigh and one in my lung but because they were all so close together, they don't know if they are multiple or a single incident. They're not considering the LAC positive while on Apixaban but annoyingly now also aren't considering the LAC positive they took 8 months later since I was on Warfarin. Dr who ordered I said Warfarin wouldn't impact the result but his superior seems to be saying otherwise.

Now they are saying I'll need to switch to Heparin for 4 weeks to be tested properly! They've lost my confidence so I want to see if I can find a private consultant that can confirm what is needed for a conclusive test. After that I hope I can get proper care and an amended INR and frequent blood draws

[Lure2 in reply to gazaeee]

I did not know that when you started Warfarin you later took a bloodtest for the Lupus Anticoagulant (?) . It is not possible to take a test for LAC when on Warfarin. At least it is very difficult. So perhaps you have to stop Warfarin and switch to Heparin if taking the test for Lupus Anticoagulant. The test for Lupus (SLE) has nothing to do with the Antiphospholipidsyndrom test.

Kardiolipinantibody-test, anti Beta-2-Glycoprotein- 1, Lupus Anticoagulant. Those are the three bloodtests you should take twice with 12 weeks between the tests.

Get a Specialist if you get a diagnose.

[gazaeee in reply to Lure2]

Thank you Lure,

Yes I didn't understand all of that but knew that it was challenging. When I raised this with the Haematologist he said Apixaban would affect the result but not Warfarin. Only after the result came out did he then say no we can't take it as being accurate because I was on Warfarin (I think they must have done some retrospective research that made them realise that). I have though read that you can test but like you said, it is complicated and highly specialised.

I've since (earlier today) requested to be referred to a hospital who seem to be much better set up for this so we shall see what they say.

If I have this which it really feels like I probably do (based on things that have started to happen over the last 12 months) diagnosis is really important for proper care. Target INR can change and frequency of bloods will hopefully not continue to become ever wider apart.

[KellyInTexas Administrator]

I hope my belated response is finding you a little better.

I think Mary and Lure are both likely going in the right direction.

POTS is dysautonomia often caused in APS patients by sludgy blood not innervating the tiny vessels that control GI motility correctly.

That’s the most elegant explaination.

Often it’s never so simple and elegant with us.

PoTS often occurs in Ehlers Danlos in absence of APS. POTS occurs in Primary Sjögren’s...

So that leaves me to be suspicious of Low inr. ( but get checked for PoTS/ dysautonomia also.)

[gazaeee in reply to KellyInTexas]

Thank you Kelly,

You've given me a few terms to look up

My INR this week was on the low side at 2.1 so I wonder if it is that.