Could this be APS

[Burtie-bengal]

Hi

I’m asking for my 40 year old husband.

Since September he has been quite unwell.

We returned from holiday and about 3 days later he developed a red raised itchy rash on his torso. ( it was a bilateral rash) Two out of hours GPs said I was on allergic reaction to something. About 2 days later he woke with a severe headache, photo phobia, temperate of 34.2 and the rash changed and looked like sepsis. 111 sent an ambulance and he was sent to hospital with suspected Meningitis. All tests for this were negative, also CT on torso fine and CT to check brain was ok. He was discharged a week later with migraine.

It took about 2 weeks for him to feel better from this. But was left with severe fatigue ( sleeping 12hrs a night and napping during the day)

About 3 weeks later he had 3 episodes of vision loss in his right eye. lasting about 10mins each time. After the 3rd he finally saw a GP who sent him to the stroke clinic for a suspected TIA.

All tests at stroke clinic and eye clinic were ok. Brain MRI did show micro bleeds. Bloods ok. They refused APS as said it wouldn’t be as others normal. Diagnosed with migraine due to age but said can’t rule out TIA.

Since September he has had headaches non stop with shimmers and flickers. He sleeps all the time ( tested for apnea but fine)

2 days ago he had another vision loss same as before about 10mins black curtain effect.

Propanalol for migraines hasn’t done anything.

His mum has tested positive for ‘sticky blood’ after TIA and takes clopidogrel.

The doctors have been useless so we are considering going to London Bridge.

He does have history of ptsd and chronic pain due to being injured in Iraq in 2008. The doctors blame everything on this.

I have obstetric APS and knew some of the symptoms could be possible APS / autoimmune but this is fallen on deaf ears when we see the GP ( but to be honest I have no faith in the I was told I couldn’t have clotting problems after 3 healthy pregnancies so went private)

He has a family mums side history of hashimotos thyroid and lupus too.

Many thanks if you have read to the bottom!!!

[Burtie-bengal]

Sorry just to add to all that he also has poor long and short term memory which he has had maybe 5 years . After his stint in hospital he forgot where he was driving twice.

Also he has a funny tremor which he has had for about a year his hands and fingers sort of twitch and also this thighs. He does this all night while asleep. This has been put down to ptsd by neurology.

[packerfan]

Does not

[packerfan]

Does not look like aps is he complaining of dizziness or temporary blindness of so find him a aps doctor's fast

[packerfan in reply to packerfan]

this has been going on for ten years, I have threatened ,pleaded, begged , and walked out on doctors. If nothing could be done they should say so. I have given up on finding a doctor who knows what he is doing. I told the last doctor that this was no way to live and the next thing I know the police are asking if I am going to commit suicide. I am Was a cop but cannot anymore due to this aps

[Lure2 in reply to packerfan]

Hi Packerfan,

We talked a lot 5 years ago. I told you to have a "fight" to get to an APS-Specialist (someone who every day see patients like us). You told us you were on Fragmin 15000, Aspirin and Plaquenil at that time.

You told me you should look for a Specialist but I now wonder if you did find one?

When diagnosed 10 years ago did you have all the three antibodies positive or only one? It is ok to be diagnosed with one antibody positive if you also have symptoms. Sometime we get microembolies and those tiny ones are very difficult to find on an MRI or a Scan.

David (no longer with us as an _Administrator) told you to see an Ophtalmologhist (eye-Doc) for your dizziness and ev Amaorosis Fugax. Balance and ears also often are attacked by APS. Hope you finally find a Doctor who you can trust and who knows APS.

As you see I do not give up and I hope you do not give up on yourself either. Sorry for my spelling but I am from another country.

Kerstin

[packerfan in reply to Lure2]

Only on Fragmin now lose vision two or three time a day and fall on average three times a day all done

[Lure2 in reply to packerfan]

Hallo again Packerfan,

Now I do cannot follow you. You say you only take Fragmin. I thought you took Warfarin and had a selftesting machine. Those days (probably 5 years ago) our Admin Dave answered you like me also (as Dave an I had almost the same symptons from our eye those days). Now as i keep my INR of 4.0 I do not have any symptoms from my eyes like Amaurosis Fugax and double vision and Auras with (forgot the word I am also from Sweden) funny vision with a lot of flashing coulours and shapes.

I also fell those days without a reason. Those things are microembolies or microclots or ministrokes called TIAs and should be anticoagulated.

You say you loose vision two or three times a day. In what way? Both eyes? - lower part of one eye? - a couple of minutes or longer? You know I am not a Doctor but I have had these things and heard of several people with APS having same symptoms.

[Lure2 in reply to Lure2]

I can not be sure this has to do with APS of course. Did you see an Ophtalmologist after you talked to Dave? Try to do that if not. Also take contact with a Doctor or GP and hear what he says. When you fall - can you remember what has happened afterwards?

[Lure2 in reply to Lure2]

Kaleidoscope and zig-zag pattern were the words I lost and I meant.

[Louloubug in reply to packerfan]

Hello, how is your vision?

For example, do you see double vision.

When you have any vision issues, CHECK YOUR BLOOD PRESSURE.

NORMAL IS 120/80. FOR EVERY PERSON. AFTER YOU HAVE CHECK ED. AND THE NUMBERS ARE EXTREMELY HIGH. GET MEDICAL HELP IMMEDIATELY.

[packerfan in reply to Lure2]

was taken off warfrin and coumadin many years ago could not regulate my inr never self tested no machine do not worry about me.

[Lure2 in reply to packerfan]

See an Ophtalmologist for your eyes that Dave told you 5 years ago. You do not tell so much about your eye-symptoms. I asked about that. I

Of course I worry about you. Who is going to help you? This is a good site to get help.

Put a new question here and you will get more answers. I wanted so much to be of help to you in some way. It is a long way between Sweden and the US though.

[packerfan in reply to Lure2]

Already have seen eye doctors twice nothing wrong two months ago difficult to walk upright do not believe spine healed correctly not going to see doctors who will do nothing

[Lure2 in reply to packerfan]

Ok. That is good. So there is nothing wrong with your eye.

Amaurosis Fugax is a sort of TIA coming usually from the Carotis environment and caused by low bloodflow (ischemi, emboli). I ddi not see an Ophtalmologist for it but my Neurologist at the hospital wanted me to start Warfarin which I did later. Anticoagulation helped me.

You did not describe if it is one eye, how long time, like a curtain, part of the eye etc?

Many reasons why we can fall. I fell without possibility to get my arms to protect me from my fall. There were no reason why I should fall. First time i did not know how long time i had been on the ground. Some blood in my face. No one saw me.

Why I tell you this is that it could be easier for you to understand of your eye-issues and falls are caused by too low bloodflow like a TIA or some other reason.

Best wishes.

[Burtie-bengal]

Sorry do you mean it doesn’t look like it with the rash?

He has had 4 episodes of temp vision loss and he is dizzy quite a lot of the time.

[MaryF Administrator in reply to Burtie-bengal]

I would be seeking urgent medical help, it is important, and stand firm if they do not understand Hughes Syndrome/APS, MaryF

[MaryF Administrator]

Hi, he needs a referral to a recommended Hughes Syndrome/APS specialist in view of his symptoms, medical history, and his family medical history, also his Thyroid needs to be looked at, also levels of D, B12, Folate and Ferritin, he also needs a referral to a Dermatologoist. Neurologist frequently miss this condition, (Hughes Syndrome/APS) and at times some medical professionals are too ready to somaticize ailments. Bear in mind that at times people test negative for a while before showing up positive, (sero negative) Hughes Syndrome/APS. I know it is difficult to get appointments currently, but I would keep chipping away. MaryF

[Burtie-bengal in reply to MaryF]

Thanks

I think I will phone London Bridge tomorrow and get a video consultation booked for him. Then hopefully the GP will agree to testing bloods if the doctor at London Bridge recommends it.

He has had thyroid tested loads it ranges from 0. Something to highest 7ish. Seen endo on nhs and told it was all ok. He has also seen dr peatfield who diagnosed hypothyroid and adreanal issues and he did do well on armour and cortef but it stopped working so he stopped taking it then life got in the way. That was about 5 years ago and he was much healthier than he is now.

[MaryF Administrator in reply to Burtie-bengal]

Some of us re test our Thyroid levels, by doing far more accurate and detailed private testing. Either the most comprehensive tests from Blue Horizon, or another company such as Medichecks, The last one I ordered was from Medichecks, Thyroid Check UltraVit Blood Test, However if I was taking T4 based medication like Levothyroxine I would have added a Reverse T3 test on. It is not unusual to develop more autoimmune diseases if you already have one. MaryF

[KellyInTexas Administrator]

That is a very typical , “ I’m having some sort of auto immune reaction” rash.

( I’m worth every penny, aren’t I?!😊)

Beyond that, best call London Bridge, just as your instincts are telling you.

For a true “APS rash” , I would expect a livedo of the two most seen variations.

Gosh- I’m so sorry he’s had such a tough time.

On a side note, I would ask to see an infection disease consultant. See what he might have been exposed to since meningitis was not firmly ruled in or out. Have high titers checked for a response to any number of things like EB virus for example. It can show if he mounted a response in the last year, but not active infection. ( and not longer ago than a year.)

Perhaps London bridge can refer you. ( on the NHS?) those blood draws can be quite costly I know.

[LindaMorrell]

Hope you find out what us really the cause. Keep trying

[veganworld]

HI

If you can afford it you could try to get an appointment with Prof Hughes in London. I believe he only see's people privately in London Now. I was very fortunate to see him twenty years ago at Guys under the NHS. I had mini clots on the brain and all kinds of symptoms including a clot on the lung. As Mary says they should take notice of family history. I was getting migraines and sleeping lots, clot on lung was out of the blue, hadn't travelled or anything. Doctors found nothing wrong and then I got to see Prof Hughes and he put me on life long warfarin and the migraines and constant sleeping etc all stopped. He gave me my life back and will stick his neck out for you even if you don't test positive like myself if he believes you have it. He explained that a small portion of people he has seen that he is certain have this condition for some reason don't test positive. I am sure he is in his seventies now so how long he will keep working I don't know so sooner rather than later. Also you can order a book on Amazon called sticky blood explained by Kaye Thackeray. Its very good at explaining all the various things that go with tis condition. Prof Hughes told me about it.

Good luck

Kaz

[Lure2]

Hi burti-bengal,

I did not see that your husband had TIAs and that his mother had APS, Thyroid-issues and Lupus (SLE ?)Sometimes APS will run in families.

Does your husband take any anticoagulation drug now and did he have any of the three antibodies they test for APS, positive? Hi may need anticoagulation for his neurological symptoms.

A positive antibody twice with 12 weeks between the bloodtests and some symptoms typical for this illness, should give him a diagnose of APS.

I think your GP should remit him to an Ophtalmologist (eye-doctor) for suspected Amaurosis Fugax (could be TIA). Those Doctors often know a little about APS as Sjögrens syndrome (an other autoimmun illnesses going hand in hand with APS) has eye-issues also.

Most important look for a Specialist which is very important for our outcome.

[Lure2]

I see this is a 4 months old question but I have answered two persons on this question you wrote.......so here we go...

I find it interesting if also you have got positive antibodies for APS like your husband. I have never heard of something like that I think. That is very rare indeed. Wife and husband both have APS!

Regarding those red dots on your husbands arm do not look like something that has to do with APS to me.....but I am not a Doctor which he needs and i guess you have now seen a Doctor for it.