Back into St Thomas'.... after asking for a referral for 8 years!
A very useful appointment, but as one of those with seronegative, clinical diagnosis via London Bridge Hospital.... was told that unless the blood tests are positive it can't be confirmed that I have it. If i was not so tired, I might be tempted to dance up and down with rage and pull my hair out. I did suggest that they got out my old notes, and the reply was that this would take months due to their archiving. I have been told by London Bridge that if I and my sisters test negative...(we have all had blood clots)... then so will my children who have terrible migraines. So a relief to get there and another frustration. However a very very useful appointment the next day with Dr Barry Durrant Peatfield.
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MaryF
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I'm so sorry things not go very well at st thomas's. Hughes is such a difficult disease to live with and to get diagnosed. Trouble is until we tick all the boxes in there eyes it's not there.. As you say they could refer to previous notes.
I really hope they get things sorted and maybe then they will look at the children. Glad you had better appointment next day.
Take care, gentle hugs love Sheena xxxxxx jessielou xxx xxx
Yes we have a long family history of clots in legs, and lungs, henochschonlein purpura and thrombocythemia... I had all my children at St T's...spent four months with my first one awaiting clots disolving... then more two more lots of being pregnant on fragmin, during and six weeks after. I have had pericarditis, awful migraines in childhood and now... and severe balance problems at times. My sisters the same... although one sister lost 7 before having a child! As the professor says, we have a clinical diagnosis with very strong family history. My children definitely need a close watch considering one had a migraine lasting 15 days and 4 months causing weak legs and blackouts... and now my daughter has it. Thanks any how.
Mary I find this very interesting. First of all I am sorry for the problems you are encountering. The medics can be so frustrating at times. It sounds to me although you dont actually say that you were actually dx by Prof Hughes I assume with seronegative results but strong clinical history thay you were?
Tommy's are saying you dont have it unless you actually have the antibodies? Am I right?
If this is the case you are exactly the same as me. I have been dx by Prof based on clinical history of classical symptoms of Hughes. He said "You have Hughes, there is no doubt of that". So for me if the man himself says thats what I have then thats what I have! He also said that the blood tests are not that great and that they know that there are still a great may people that the tests are not sensitive enough for or may have slightly different antibodies but they are working on perfecting better tests.
At the moment I am lucky enough to be able to stick with him BUT if the pennies run dry and I have to go to Tommys what now worries me after what you have said is that they are going to believe me if I say "Well Prof said I have it"! Is that going to be good enough? Why if you went to London Bridge is it not being good enough for you?
Like you I have spent most of my life fighting prejudice because most people did not believe I was ill, (its all in your head), well thats exactly were it was in my brain! I had a PE, they thought it was a chest infection, a stroke and it was a migraine - until they saw it and three others on the CT. I could go on but I am sure you understand where I am coming from. I could not go back to fighting again when now I feel vindicated. I am so worried now after what you have said and just cant believe that Tommys would treat you in such a way.
Thanks... I did get diagnosed by the right person, and.... they were perfectly fine to me at St T'.... I guess they have set criteria, and if I like you do not fit in, until medical boxes can be ticked there is not much I/we can do. I shall keep chipping away, my relatives also test serongative and have had similar feedback. Perhaps I shall attend my next appointment there wearing a large sandwich board... saying 'seronegative' Meanwhile.... I shall continue with my excellent diet and exercise programme which has been in place for life and extends to my children. Thanks by the way x
Just had a conversation with that person and mentioned this as my daughter has an appointment at Tommys today and I am going with her. I was scheduled to call about my own medication but wanted to get some advice given that she was probably going to be seronegative too. The reaction was "Utter rubbish" to the question If I am dx as seronegative with you and transferred to St Thomas's and my blood tests negative there, will I be told they cant confirm Hughes there?
He says to ask to be under Dr Khamashta as he is the expert in seronegative and doing all the research in it. Thats who we are seeing. Will let you know how we get on.
Well what a waste of time. Thankfully we noticed just as we were leaving that her letter had Dr Hunts name on it not Dr Khamashta's. Given thats what her GP had referred her for and she had asked for, she decided to call rather than go. Good job as we found that they had booked her into the Lupus pregnancy clinic! She explained in vain that she had been asked and answered that she was to be booked into see him but they told her that they had no referral letter from the GP so had to book her into Dr Hunts Clinic. My daughter had no option but to cancel the appointment, go back to her GP and start the referral process all over again.
When we got to her GP's this evening the doctor we saw was not the one who had done the referral as she had left the practise, however she showed us on the computer the referral letter which was sent to Tommy's clearly stating it was for the General something or other and for Dr Khamashta's Clinic. Nowhere did it mention Pregnancy!
Her poor GP now has to do all the paperwork again, go back to the PCT and then we have to wait for another appointment! Its clear Tommys have mucked up and either lost the referral letter or just stuck her in this clinic by mistake. My daughter remembers them telling her when they first called her that they were booking her with Dr Khamashta, it was only when the letter arrived that it had Dr Hunts name on it. Unfortunately my daughter didnt notice that until today when she was looking at the details.
I hear so many wonderful things about Tommys I hope this was a momentary lapse! Its my daughter I feel sorry for who now has more waiting to endure. Sigh!
Hi there, I am sure it will all get ironed out. I had all three of my children at St Thomas'.... and they picked up every other emergency I had which is in direct comparison to my local hospital - Ipswich! Mx
Dr Kamashta is a womderful person!! Last I knew he was in the US for a visit, is he back in the UK?
Do not give in. I am sero-neg. Professor Hughes diagnosed me in 2005. I attend St Thomas,s yearly. I was told sero neg, is rare this year by one of the docs at St Thomas's. I am symptomatic, but my bloods are negative. However, i have many episodes that prove i have a clotting problem. Plus my daughter has an heart problem which is related to my conditions. It so annoys me when we has the patient know how our body feels, and no one listens. I had to retire from my profession due to my illness. Hope this is helpful.
Yep it can be very frustrating..I try not to think of it being anybody's fault or mine...just chip away at it all, and try to laugh a lot... a cure for all ailments in my opinion x
I too am seron. but I am treated at St Tommies and no body there has ever told me that I don't have Hughes, I got my first diagnosis at St Mary's Paddington in their recurrent miscarriage clinic based on clinical symptoms and a thrombologram (not sure if that's the right word). Then I was later lucky enough to see Dr D'Cruz at The London Bridge who took me on at St Thomas' at the Louise Coote Unit. I have had a couple of borderline tests. I think Paddy is right, just keep plugging away.
I'm so proud of your strength and determination. You are an inspiration to us all
Thanks Sharon... I read your blog post today... very inspiring also, well done you and all your positive upbeat efforts. I keep on with my excellent diet and exercise and continued medical reading... have found out now that I am hypothyroid... done all the reading and seen the correct person, which has driven all my conditions, as in other ones... mad. St T's have come back to me... it will all be ok I think.. xxx MF
Fascinated by all your comments on being seronegative - after having had the most appalling and debilitating migraine for more than 3 years now, a chance met old acquaintance suggested I look into APS. Reading your blogs has been like having my medical history described to me by complete strangers. Have battered my way through the GPs negativity and had two lots of assorted tests done (one through NHS and another privately) all normal I am told apart from my red blood cell count (high) and copper and caeruloplasmin(low) everything is normal and I should accept my migraine diagnosis and get on with life as best I can. I have asked to have copies of the actual results so I can do some research myself. Most GPs make me feel that I am being unreasonable. Does anyone else out there get tremors?
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