My son is being messed about when it comes to a diagnosis. Too many doctors conflicting advice

Hi my son is 19 and has been in hospital for 2 weeks. He is now in rehab getting the strength back in his legs. In July he had myocarditis and then pericarditis which is still on going. He had abdominal pains and his appendix was taken out. Shortly afterwards his heart rate was hi and he ended up having seizures and was unresponsive for over an hour.

He has had 2 ICU admissions and only went in to have his appendix out.

He is under a rheum and has just commenced Plaquinel and is on 30mg prednisolone. The Rheum said although all his bloods are clear she thinks it could be Lupus. He is having an MRI spine next week to rule out a neurological problem. He has had aching joints since a young child so I think he has always had this problem. He is lethargic and has been for two years since having glandular fever. He is loosing his hair and his feet and hands go blue. He has blurred vision at times and has to lock his knees to stand up. This has happened before when he had myocarditis and the strength came back slowly. I wish the doctors would put all of it together and not look at things separately as it seems to coincidental to be separate issues. Does any of this ring any bells for you guys. The Neuro doctors say it isn'

t SLE and my son is so desperate for a diagnosis so that he knows what he is up against. Now they have said that he is really upset and down in the dumps.

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  • Goodness your poor son so young and poor you watching it all happen. I heard that people are misdiagnosed with glandular fever instead of SLE. He does seem to be having a lot of different things going on. Could you possible get an appointment with St Thomas in London, they see Lupus so much more than anywhere so would look at the whole picture, because you are right someone needs to gather the info together. It took me 6years to get the correct diagnosis I saw every doctor in the hospital and had to paid privately to see a rheumy hadn't seen one of those and finally I got an answer. Be insistent your son has rights and what ever the answer is he will cope better knowing and what he is dealing with rather than not knowing. Good luck to you and hope you get this sorted. Let him have the right to feel a little down it is understandable. Xx

  • hi emma,

    the locking of his knees sounds like hypermobility syndrome, is he double jointed?

    the hands and feet going blue sounds like raynulds are they cold? circulation problems.

    the thing is it looks like they are treating him for lupus, it has many symptons

    the blood results dont matter i am sometimes positive and at times not.

    many people have lupus and never test positive, it can take years to get a diagnosis

    in my case it was over 4 years.

    tell him to try and not worry as it appears he is being well looked after

    in time he will get his answers.

    has any one mentioned "mixed connective tissue disorder" to you?

    i hope he gets better soon. good luck.

  • Omg!your poor son and poor you as a parent to watch him suffer.Sounds like lupus ???or some kind of autoimmune issue ,thing is most autoimmune issues can involve so many areas in the body .I was a very lethargic achey type child ,and my symptoms really kicked in at 20yrs old ,with an array of issues ,heart,nervous system,G.I system,joints ,connective tissue and more ,was told by doc it was because of glandular fever ?epstein barr virus ,and i had post viral fatigue ,then it was M.E /chronic fatigue ,after 16 more yrs of symptoms and flares was told fibromyalgia and sjogrens,and then....ta da....lupus!it was lupus from day one !my bloods show positive A.N.A and a few others but often are negative at a point when i feel rotten which is frustrating .I would continue to push for answers however these collections of diseases are treated pretty much the same ,you may get a few different answers ,if steriods and hydroxy help ?then work with this ,try the most holistic health approach you can with him ,remove all allergens in food if you know of any ,keep a very healthy gut for him as most of our immune systems lie in our gut ,a healthy gut ,a healthier body ,i hope you move foward and he gets to live as a typical 19yr old.Sounds like he is having a very big flare ?once brought under control ,lifestyle factors and self management will help ,i really wish you all well .I just read about the fantastic anti-imflamatory properties of turmeric,you can get turmeric capsuals at health food shops,if it reduces inflammation , that has to be a plus with these disorders ?keep well brave;)

  • Just as a long shot do make sure they check him out for Hughes Syndrome.. Antiphospholipid Sydrome. a percentage of those with Lupus also have Hughes, I have both. Otherwise known as sticky blood... some clues, did he have terrible migraines anywhere in his history... etc etc: ie a venn diagramme of Hughes and Lupus shows the little group in the middle! This may not be the case, but please at least look into it as a long shot, many doctors have never heard of it. If any of the symptoms sound familiar you need to find a rheumatologist or haematologist with knowledge of the condition. St Thomas in London have the expertise: Ofetn with autoimmune disease, many of us have overlapping profiles. I have five things and use several forums:

    hughes-syndrome.org/overvie...

    Mary F x

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