I just wanted to ask if anyone has had the same experience at their first consultant appointment?
Yesterday morning met my haematologist consultant for the first time (Warwick Hospital), and came out after my 20 min consult more confused than when I went in.
So far I have had 2 positive ANA and/or lupus tests (again still confused over whether these are the same tests or different) and have a whole list of other symptoms:
Excrutiating headaches/migraines
Extreme tiredness
Pain in knees and feet
Feet, toes and fingers are always and purple
Mottled skin
Heart palpitations
1 case of lung blood clot
1 miscarriage
Numbness in fingers and loss of use in arm
feelings of being drunk when sober
Slurred speech at time
and the list goes on.........
The consultant I saw yesterday was'nt really interested in any of the other symptoms just seemed very cross that my GP had referred me when I hadnt had multiple miscarriages and only the 1 case of known clot, and then told me she was going to write back to my GP for her to refer me to a rheumatologist - another long wait then . In the next breath was then saying about for her to be able to put my case across for long term warfarin medication she would have to do a MRI on my brain to check for small clots.
So needless to say this has left me very worried and not knowing where to turn next, and without any clue of whether I do or do not have Hughes/Lupus.
If anyone can help I would be extremely grateful or have any ideas of where to go next. for such a long post.
Kerry
P.S. Merry Christmas to everyone x
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dragtalav
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Oh dear,a consultant with only half the knowledge on board if that. You need to go back to your GP, as they are being so helpful with referrals. Show them this: guysandstthomas.nhs.uk/our-...
and also print them out a couple papers off our site: See if you can persuade them to refer you to there, and if they can.. they can then guide the local team and help your GP! It saddens me to hear that somebody was cross that your GP had referred you! Your GP sounds more in the loop to me. Mary F x
Hi Mary F, Thanks for your reply, yes I'm going back to my GP next week as I want to speak to her about the heamatologist not taking down all my symptoms and also I need to speak to her about this letter she will receive with regard to the rehumatologist referral, so I could try and speak to her then.
Yes - and what you are going through, is quite typical of many of us on here, not just in the UK... I know it costs.. I had to save up for London Bridge... I took with my my last blood test results which i got from my GP surgery, did the same with my thyroid tests etc etc. So what I paid for was just the appointment... Many of us have had to do this. To be clear. If you go privately... to bring the NHS into line with your care... it is London Bridge, there are not any private referrals to St Thomas'. Best of luck. And please take the prints outs.. this is how I got places, and you will many on here have followed this idea with the idea of taking the right information along and gently pushing! Mary F x
No I haven't had any medication or recommendation of medicine as yet the only thing she gave me was a pink slip which the nurse whisked off me as soon as I walked out of the room (have no idea what that was for), a yellow slip to book MRI and sent me off for more blood tests, a lupus anticoagulant, a B2 Glycoprotein 1, FBC, Renal, Liver, and another 2 that I can't remember the names of. She said I had to have another positive ANA as my first 2 positives were only just on the 3 months apart line. The MRI has really frightened me especially as at the minute I seem to be having alot more headaches than I normally do.
She has told me to see my GP next week after she has written back to her to discuss referring me to rheumatologist as they can't do internal referrals, so I coud maybe ask about a referral to St Thomas then, as privately there is now ay we could afford it at the minute.
to add, please do not worry about the MRI, here in France it is one of the first things they did for me, they look for any white matter and lesions which helps them give a more accurate diagnosis.... ie for sneddons etc. It is nothing to worry yourself about...so although your appointment was negative..she is doing something!!! although I was started on aspirin at this time..having never had a clot! just symptoms.....along with the blood tests etc this was when I was diagnosed best of luck! x
I am sorry you are yet another victim of poor communication at the hands of a 'medical professional'.
I would like to tell you that you shouldn't worry about having an MRI as it would appear that it is exactly the right thing to do considering your symptoms.
The MRI is to show up any damage that small clots (TIA's) may have caused in the brain.
If you have a referral to a Rhuematologist they are ussually the specialists who deal with autoimmune illness, so maybe the nuerologist is on the right track.
My symptoms almost mirror yours and were proved by MRI so don't be too daunted as it sounds as though you are, at least, being sent in the right direction.
just a word of warning. I had at least two MRIs after I was diagnosed and on aspirin. I was told that they showed a few white spots'but they were nothing to worry about'! It was only when they were repeated when I finally got to St Thomas's that it was confirmed that they did indeed account for my increasing cognitive dysfunction. When I queried the disparity St Thomas's registrar said it was a case of how they were read and that their radiologists were able to'read'the fine detail. By the way, it was the neurologist at my local hospital who referred me to St Thomas's. She was brilliant inasmuch as she admitted she couldn't help me but felt that they could. I now attend the haematology clinic there under prof Beverley hunt and they are great. I was put on anticoagulants immediately and now self test. Unfortunately, those little white spots were brain damage and I can no longer work or use my hands properly, plus other probs, so I urge you to get that referral. Also, the rheumatologist was useless at my local hospital (yours may be better). Best of luck, Stella
To be honest, I would go with seeing a rheumatologist. Often, people can have multiple conditions so it could be that you have an underlying condition causing some of your conditions (on top of the APS) and a rheumatologist is the best person to rule out other things. A lupus anticoagulant test is the same as ana (I know from my rheaumatology letters). I’d suggest asking your gp if you can temporarily take daily low dose aspirin while you wait for your next specialist appointment. If they are hesistant, speak to them about the risks of having sticky blood (another term for APS / Hughes) and not being on anything. They greatly outweigh the risks of taking 75mg aspirin for a few months. You can buy 75mg aspirin from boots, Superdrug’s etc. Just make sure it’s 75mg & not the larger/normal dose as that is more dangerous daily for prolonged use.
Do not worry about the MRI. I got one because I have daily headaches, migraines, cognitive issues etc. They found a small grey spot on my brain and scared the life out of me when they said it was likely I’d had a small stroke many years ago (at least 10 years). I then had to wait 1 month to see the stroke team. They said it could have been a small stroke, it could have been a bump on the head as a child. No way for them to know for sure. They did a lot of tests for heart, lungs arteries etc and it was all good. They said I’m not high risk and sent me back to my usual specialist. I’d be more concerned if they didn’t do an MRI.
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the only thing she gave me was a pink slip which the nurse whisked off me as soon as I walked out of the room (have no idea what that was for), a yellow slip to book MRI and sent me off for more blood tests, a lupus anticoagulant, a B2 Glycoprotein 1, FBC, Renal, Liver, and another 2 that I can't remember the names of. She said I had to have another positive ANA as my first 2 positives were only just on the 3 months apart line. The MRI has really frightened me especially as at the minute I seem to be having alot more headaches than I normally do. 
Confused Newbie
HELP PLEASE
Some advice for a newbie please?
Looking for some help please - not diagnosed
