Advice, please

[mully]

HI , apologies this is rather complicated, in In 2002 I was diagnosed by Dr D'cruz (after my mother paid for me to see him privately) with seronegative APS and multiple sclerosis after a positive lumbar puncture and MRI had previously suffered multiple miscarriages multiple thrombotic events including iliofemoral DVT and pulmonary embolism

They decided to treat my condition as a combined case of MS and APS Prednisilone drip, azathioprine, and then cyclophosphamide infusion

I recovered and was left on warfarin INR between 3 and 4 (I don't ever remember them saying how long this would be necessary for) and discharged into the care of my GP and I have been without any major health issues for 18yrs

After 18 years and multiple house moves and thus many GP's, I have received my prescription for warfarin and strips and have very rarely seen a doctor

When I joined my new GP practice 3 yrs ago they did not renew my prescription for Warfarin so I considered this an ideal opportunity to see if I could manage without it

After 3 yrs without warfarin, I recently became very sick (2 weeks ago) with terrible head pain following an achy blue leg which is still swollen, and was rushed into hospital with suspected TIA

All tests have been completely negative (and I mean absolutely everything) they took a bucket load of blood MRI contrast imaging scans They were very efficient and certainly looked for problems and I am now discharged

I am now suffering from terrible migraine-like headaches numb arm and leg my leg is still very swollen and blue It really feels like history is repeating itself

My Gp is a complete !!!! ( sorry no other way to describe him ) He has offered me carbamazepine for my headache he thinks I have trigeminal neuralgia diagnosed by a phone call he has never seen me in fact I have never seen any of them since joining the practice

He has my diagnosis in front of him on his screen which is apparently demyelinating syndrome with CNS involvement from a most likely underlying vascular disorder

He has refused me a referral to either a neurologist or a rheumatologist saying it's not necessary nor will he reinstate my prescription for warfarin again saying it's not necessary

I have no specialist no help from my GP and literally feel like I am dying

I can not afford to go privately as my financial situation is dire

what do I do next, what is my next move I feel so ill I am losing the will to fight

Thanks for any replies sorry for such a long post

Jane

PS all previous test 18yrs ago were initially negative then literally progressed over a matter of weeks and became horrifically bad couldn't walk couldn't see had demyelination in the brain and spine multiple embolisms and my situation was grim

[lupus-support1 Administrator]

I am shocked by your story. No one should be treated in this way.

IMHO, I would take yourself off to hospital. I don’t see any alternative at this point other than a new GP. But given your symptoms, you need treatment now.

With good wishes,

Ros

[MaryF Administrator]

Hi, sorry had to edit one word out of your post, re the GP, even though I understand how you feel. So, yes as per your first response, go to hospital, you need to be properly assessed, also your B12 tested, as this can cause neuralgia on top of everything else. You also need to write to the practice manager and GP, bullet points,, regarding your medical history, your diagnosis, (include any results you have had that show things up), also your current symptoms, and also include your MP in the email, explain that if anything happens to you in the meantime you will hold them directly responsible. I suggest you also include a link to the charity pinpointing the symptoms list etc. ghicworld.org/ MaryF

[GinaD]

Im in the US, so cant offer any practical advice except, yes, go to the ER and my prayers will be with you.

[Vailea]

So sorry to hear you are being treated so badly by your GP . I also think you should go to A and E where theycan check your INR and do other tests Ultra Sound on your leg etc . Go armed with your history printed out if possible so nothing is missed and its presented in a easy readable format (We can all forget things when in front of Drs ). So many still don’t understand APS but i found Drs became very interested when i told them about Dr Hughes work and research rather than confront them about their own lack of knowledge . One even Googled it all while i was there . Maybe they will refer you to a specialist. Depending on your results they ought to put you on something and Warfarin is a cheap medication thats tried and tested . I do hope you get the treatment youvare entitled to xx

[Lure2]

Hi mully,

APS- antibodies may go up and down. You can be seronegative one year and the other year you may well be positive. Also we may have microclots and very tiny embolies and they usually do not show up on an ordinary scan or Mri. At least it canbe very difficult to get to see them.

I am primary APS, triple positive with persistant high titres but they have never found anything on me.

I have been on Warfarin since 2011 for TIAs and neurological symptoms and live in Sweden.

As said before get another GP and ask for bloodtest (among others the 3 antibodies for APS). Also go to A& E and try to get a Specialist for autoimmun illnesses who works with people like us every day as a Rheumatologist or Hematologist. The Neurologists do not usually get that the problem with us is our very sticky blood that has to be properly thinned.

Sometimes MS and APS can be misdiagnosed. It is rather unusual to have both but important to have a Neurologist who can decide which is which one and who is knowledable of APS. It may ofcourse be possible to have both.

Warfarin became my lifesaver and I selftest since several years here at home.

I wish you luck in finding your own Specialist. Hope you stay with us here and do not wait any longer to get the help you need so well.