My son in his twenties with the similar symptoms to me??? Advice needed

Can anyone help me with this one, I have APS with all the variety of symptoms including strokes, my son has been poorly now for over 18 months, with many abnormalities in his blood and significant neuro problems, doctors here cannot put their finger on a diagnoses, I have been trying to get him to have the blood tests for Hughes but he will not have it, I do not think his GP is aware of the syndrome, recently I saw on here a blog advising that family members should be tested, please help....many thanks

13 Replies

  • Hi there I can understand his reluctance but maybe he needs help from someone he trusts outside the family to talk about how the test might be beneficial. Presumably he could be tested at the same place which cares for you. I thought long and hard about my children being tests, however my daughter systemic lupus and hughes... and suspicions about my young son now, better to be safe than sorry... and he may not necessarily have it.. often families have a host of autoimmune problems, and this can include headaches or asthma that are not hughes syndrome. I wish you the best of luck with this. Mary F x

  • Many thanks for everyone's replies.. my son is really poorly has loads of abnormalies in his blood and is currently seeing a endicronologist who advises that he is still surprised that his GP has not referred him to see a neuro, he contacted the secretary recently to push for the letter to his GP yesterday and was told that letters from consultant has to be sent to New Zealand to be looked at first before sending back to the doctor who wrote it to sign??? my son is consumed with fatigue and headaches amongst muscle and nerve twitches and is convinced that he may have MS he really is trying and goes to his GP regulary, yesterday his GP stated that he needs to see this letter before he refers him, my son is so low this has been going on so long looks to me that all of this is down to money and seeing the right person, I wont be seen now with my primary heamo consultant until Dec...thankyou for any advice and help

  • Hi Mary, I have just replied to Jade as well (please read below). My son also suffers from terrible blurred vision and frequent brain fogs.....what can I do about his GP, I have given him a list of relative bloods tests to request and ask for but you know I am sure they wont do them because of costs?????

  • Hi I know they prefer to ignore that they may need to get it looked into, but the fact remains that it may be going through some of our famiies.

    It is always best to get it checked just in case, like Mary says pehaps get somone else to convice know like when we make our hubbys think they've come up with a idea.....but all along we 'planted the seed!'

    I really hope he gets checked, piece of mind for you too, let us know how you get on x

  • My Mom had APS and passed it down to 2 of her son's. Your son very well could also have it. I was diagnosed at age 41.Tell him, he doesn't want to wait until a stroke like mine and end up with irreversible brain damage, or worse! that will forever effect his life. My younger brother died suddenly at 30, most likely from undiagnosed complications. I have been hospitalized 7x since my 2001 stroke and diagnosis. I now have CAPS, and was hospitalized 4x in ICU from Feb-May of this year. Uncontrollable blood clots from neck to toe. Barely made it this time. Hate to be so blunt, but tell you son I said to stop being a knucklehead!

  • My son in his 20's has suffered many of my symptoms, especially teenage migraine still going on several times per week, fatigue, brain fog etc. All local GP's said no not aps. Seen many other specialities. Last week he paid to see Prof Hughes at London Bridge as HE wanted answers to his invisible problem and hopefully some treatment. Life on hold in your 20's is not fun. I was 44 before I was diagnosed. Well guess what he had a possitive blood test for APS so now will get treatment. tell your son it is foolish to wait.

  • Hi Jade thank you, I shall show him your son has recently been tested positive for hypothyrodism, abnormal liver function tests, pottasium and low in vit D, and is suffering from terrible fatigu, muscle aches and has headaches all the time. When he was a child he suffered from kawasaki Disease...any advice please help..

  • There is a proverb - "you can lead a horse to water but you cant make him drink".

    This is probably whats happening with your son and I know how you feel because if I suggest anything to mine he automatically wants to do the opposite!

    Its so difficult when you have this situation, the only thing you can do is leave the information there for him to "find" and hope that he is intelligent enough to accept and act on it. With a disease like Kawasaki in his history however I would suggest that at the very least these symptoms are not ignored and the fact that he is testing positive for some of the "trio" as Prof Hughes likes to call it, is again a reason for him to get tested or reviewed for APS.

    Good Luck.

  • I have been tested positive for the Lupus Anticoagulant some weakly positive, but up in London positive for the T snake Venom tests and APTT, however I keep coming back negative for hypothyroidism (which I am sure I have) have had several small strokes and a larger stroke, recently have been tested positive for elevated Rheumatiod levels but keep questioning why my MCV levels are elevated for my liver, i take so many meds for this condition, I have has a recent Lumbar results show systemic passive transfer of something or other and a weakly positive protein count?? The neuro thinks vasculitus so I shall be referred to see another consultant Rheumy, I have a widespread Livedo rash and am very sick at the moment......CONSTANTLY WORRIED so frustrated as everything seems to be inconclusive with other bloods,still although I do have APS any further information would be great you are so helpful, many many thanks

  • The issue is Tracylou is teenage boys or early twenties are invinsable did you not know until I had my stroke at 16 I was the Sam nothing can touch me. If I was you I would show him some of the symptoms in the half leaflets if he let you tell him to read some of the messages on here and if he really not going to listen tell him the story of people like me.......

    Blokes are very hard when something like this hits them I am not being sexist here but this is seen as a female illness and as a bloke that's your worst fear when you feel crap and you then find out you have an illness that in all circumstances makes you feel weak. Some times we cover up the truth because we do not want to scare the kids...... Well some times that shock is sometimes what will make the changes, it's not going to be easy and we on hand to help but if he has got this you need to show a bloke why he should bother....

    I sound like a miserable so and so but the few blokes I have met with the condition have been oaps or mid 40 50 s and its very difficult to get young lads to see this can effect them .

    Give me an email if you want help


  • Please do not misunderstand it is not that he wont have it-more so that the GP's and consultants just wont give him the blood tests-he has asked on several occasions for the blood tests, he has so many neuro problems and awful muscle spasms and significant twithes-painful joints-brain fog etc etc-and has on so many occasions asked for a MRI of the brain-what should I advise if his GP will not refer him for bloods or a scan surely it is his right-recently he has asked for any documention of this sight advising GP's to have family members tested if they have similar symptoms especially if another family member has APS such as myself, what do you think Paddy any help would be appreciated-tracey-loux

  • Tracy, print the information from the Hughes site take it to his gp and say prove me wrong

  • I shall try that one but it does'nt really say about family members does it??? Many thanks Paddyx

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