In need of some advice and wondered if anyone could help please?
I posted 6 months ago about me asking for a referral with an APS specialist at M/C Royal. I had pushed for this and arrived on the day to someone different. I was a little upset. I explained everything to him, even taking my laptop so I was double sure I wouldn't forget anything. He more of less said straight away 'I don't think you have APS'.
I have had 4 positive IgM anti Cardiolipin blood test's at 78, 48, 36 and 34 (range is 0-10) over the last couple of years. IgG in normal range. I haven't seen the results from the latest blood's, but apart from the IgM being high again the rest I am told are within normal limits.
He has put in the letter to my G.P that 'all bloods are stable and we already know that her anticardiolipin has been elevated for a long time, but again that does not mean that she has any anti-phospholipid syndrome?
A little confused.
What he did say to my G.P because I have bruised on occasions without any reason and because I was due to go on a long haul flight was 'because of her recurrently elevated anti cardiolipin antibodies, I have advised a precaution of TED stockings to both her lower legs. It is debatable whether she may benefit with either low dose asprin or low molecular weight haparin prophylactically to prevent any thrombosis, however there is no robust research in this area so far. She may also need precaution before any major surgery to minimize thrombosis risk'.
He then went on to say that due to the bruising that either anti platelets or prophylactic anti coagulation may not be ideal. He left it to me and G.P to decide, but felt bruising may worsen if I took?
He said he would refer me to a Neurologist for a MRI brain scan due to issues over the years with my head (blackouts/fainting - mini fits, losing sight on occasions, migraines). My brain scan appointment came and I had, but no apt for the 'neurologist'. After a month I contacted the hospital and left a message. Today I have had a call from a different consultant to say no TIA's showed up on the scan (happy) but when I asked if there was anything, she said just the normal wear and tear? I know this can happen with age (I'm 46)
No referral has been made to the 'neurologist' she says, and a last apt to discuss with the rheumatology consultant will be sent. The first letter sent to my G.P and me after our first meeting stated that I had one more apt in clinic?
So already decided I feel.
So I know I've suffered no TIA's/Strokes. But no wiser about the bruising, the continued elevated cardiolipin antibodies and loss of sight on occasions and the other things. I will probably be discharged at my second appointment.
I don't want to suffer a stroke (mum was 56 with her first) and feel I haven't really be listened to. I'm also sick of my own voice explaining. But unsure of what to say when I go back to see the consultant. Any ideas?
Also has anyone experienced vomiting in relation to this condition?
Sorry it's so long.
Take care
Love
Bernie.
Written by
crista1
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Hi, it is must be very frustrating for you, to not have your clear clinical symptoms taken into account. Is there anyway you can go back to the GP with a firm friend or relative to ask why you were not referred to the correct specialist in your area with knowledge of Hughes Syndrome/APS and also taking into account the history of other relatives. This appears to happen to many people, and it is common knowledge that TIA's in the main do not show up on an MRI. The other alternative alongside doing the above is to take all your test results recent and previous and go along to London Bridge, I know this is a private appointment, but it is the tests that costs the most. I have had to do this with most of my family and it did help get my NHS care back on track. Please do not lose heart you are not the only person who has had this scenario going on.
I also suggest you put the whole lot in writing to the GP (preferably by email) via their secretary including the links to the charity and opening out the links showing the list of specialists and also the symptoms. Explain your puzzlement about not being referred to a specialist who was off the recommended list. You are after all trying to take charge of your care to gain the best outcome which is not only better for yourself, but also better for the GP and local medical teams. MaryF
Thank you very much Mary. It was a new G.P at my surgery who signed me to the ring and book service. I contacted direct the hospital to see if I could use the ring and book to make an apt with the APS consultant but told not. I went back to my G.P surgery who made the relevant referral, but when the apt came it said the consultants name and 'partners' on the letter. I assumed because he was asked for I would see him, but I didn't. I'm starting to feel like a nuisance (other things going on also).
I will have a follow up apt with the other consultant but I assume he won't be happy if I say I want a second opinion.
I did think about going to see Dr Hughes over 6 months ago, but after discussion with the doctor decided to stay in M/C. If I knew that I wouldn't have seen the APS specialist I would have gone to London!
It as taken months and months to get to see a consultant and I'm still none the wiser. No-one seems to know why I have recurrent elevated anti cardiolipin levels. I will self refer to Dr Hughes once I have all my papers I think.
It can take a while for things to come through, ring today, and get the ball rolling, and if Professor Hughe's list is too long, ask to see Professor Khamashta or whoever they recommend in place of Professor Hughes. You can see people there and you can still push hard for the right person in your area alongside this. You can add into your letter to the GP that you STILL need to be referred to the correct person with knowledge of Hughes Syndrome/APS and that you would like them to arrange the appointment directly to avoid more mistakes so that your time and their's is not wasted. Good luck. You can collate all tests and paperwork while you await both local and London Bridge
appointments.
You could also download and attach Professor Hughes' April Blog! MaryF
About £200 but the tests cost, so take all your results. And I have just loaded up a useful blog, just sent to myself. The address to look up is The London Lupus Centre, London Bridge. MaryF
Hi Kerstin, hope you are well. Mary is great. I learnt a lot and it gave me encouragement to ask further questions.
I'm on no anti-coagulation. The bruising has not been investigated although I have mentioned it at the hospital (I even showed photos after 2 episodes of what looked like burst blood vessels under my skin - 3 separate times left arm/wrist area, 2 inches in length, and also inside above ankle and further up my leg).
My mum has had 2 strokes, had issues with a heart valve and had an operation for it, has rheumatoid arthritis, raynaud's syndrome, sjogren's syndrome and coliac's disease. She hasn't been told she as APS, but I suspect she as it. I went along with her to see her rheumatoligist last year to ask if she had hughes and had she been tested for it in the past. The consultant skirted around the question and we came away none the wiser. So I shall go back again with mum to be a bit more vocal. Mum is on various meds.
I suffer with migraines like mum and have lost my vision in both eyes and on a couple of occasions in just one eye. The last time this happened there was no warning like when I get a migraine, I was lay on the couch when the vision in one eye just went (right usually). I thought 'heck' whats this and told myself to go to sleep. Stupidly I didn't get this checked at the time. I have mentioned this to the hospital but they didn't seem too worried.
Hi, APsnotFab is talking wise from Florida. She knows this illness!!
I have symtoms like you mention you and your mother have. It is important cheque the lung and heart and heartwalves with an Echocardiograpy with doppler. I have done that.
I think you need to be anticoagulated. And like APsnotFab says please get an APS-doctor.
Best wishes to you from a rainy Stockhollm Kerstin
Thank you Kirstin. I shall speak to my G.P and also the consultant at the hospital. Hopefully the consultant will listen but I'm not to sure he will. I get the feeling he already decided after our first meeting that I didn't have APS. I'll keep pushing for me and mum. Rainy here to in Manchester. Regards Bernie
Thank you APsnotFab. Has far as i know mum never had any miscarriages. She lost a baby when he was a couple of hours old (she carries a card because she as funny blood). She is on asprin due to the strokes she had. The first one was 12 years ago. She had to learn to do everything again, but you cannot tell now that she ever had a stroke. I shall speak to mum about a trip to London !
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