Feeling ?????

Hi All

I had my appointment yesterday and the Louise Coote Unit at St Thomas' and have coming away feeling..... I cant even describe it! Since December 2013 I have had 2 "strokes" in so far as I have had stroke like symptoms but no blood clot... which is all good but I was convinced that these were to do with my Lupus. However they say not! So what is it and where has it come from? I have been left with lasting symptoms (I get really sweaty on one side on my body only including my face and to be honest I look like a freak!!!) I also still have reduced sensation in my left side.

He also said I could reduce my medication and said that my Lupus does not seem to be currently active and therefore he would discharge me from him and refer me back to my local doctors! What does this mean? Does it mean I dont have Lupus?

I left feeling a bit confused as was my mum? And if it is not my Lupus what on earth could it be?

Kelly xx

5 Replies

  • I suspect they are the victims of their own success - so many people want to be referred to them that there isn't enough time to deal with a patient holistically, only focus on lupus specifically.

    I think they are saying that as long as lupus is controlled, your GP can deal with the administration of medication. If lupus flares up, then the GP can refer you back.

    That doesn't resolve your stroke-like symptoms. How could they have assessed that those are not part of lupus, I can't imagine. Have you been tested for APS?

  • My Mum is of the opinion that he was saying that I dont have Lupus! Hence my confusion... I am not sure that is what he was saying....

    I will look up APS I dont know what it is....

    My symptoms are as follows and they come and go but the main ones when I think I am having a flare I have listed first:

    Mouth Ulcers

    Sores all over my head

    Pain in my whole body

    Tiredness (sometimes I cannot lift my head from the pillow)

    spots (pussy) on my nose only

    Pain in my left heel

    Raynauds in Right Hand

    Low B12, Iron, Folic Acid, Calcium


    I have had 2 "strokes" as mentioned, one episode of fitting and 2 Bells Palsy's in the past.... also with the lasting symptoms as mentioned...

    Please someone tell me I am not making this all up???

    I am on the brink of tears as I write this and I dont know what else to do and who else to ask!!!


    Kelly x

  • APS (AntiPhospholipid Syndrome) is also known as Hughes Syndrome, sticky blood syndrome and 'affectionately' called sludge blood by many sufferers. There is a forum for it on here too. They also have a really good website hughes-syndrome.org/ with loads of good information.

    I have both APS and SLE and see a rheumatologist as well as my local GP on a pretty regular basis. Your symptoms certainly sound baseline Lupus like and APS can cause mini strokes called TIA's (transient ischemic attacks) which in the right region of your brain could cause some of your other symptoms.

    I'm not sure why on earth they would discharge you with completely unexplained stroke symptoms! I would fight tooth and nail to not be discharged. It could be that the consultant hasn't explained themselves very well to you, that they expected you to be fully boned up on all the medical terminology etc.

    Ask for another appointment and make sure you take a list of your questions and worries, if by the end of the appointment you don't feel happy with their resolution and they still want to discharge you then you can go back to your GP as soon as you feel you need to and ask to be referred again. Maybe to a different specialist.

    Don't stop until someone has given you definitive answers which you understand and are confident in.

  • Poor you, I used to go to st Thomas when dr Hughes was there. He was amazing. I have lupus SS and Fibromyagia and in the last 4 years had 3 mini strokes. It was at st thomas that suggested I had never had one even though they had the MRI in front of them. I stopped going after that it was a long way and at the time I didn't need not to be believed after spending years with no one believing me. Do you have another Rheumy you can talk to. I was eventually given a new drug and so far so good. Two years since the last one. Lupus doesn't always show in blood tests Dr Hughes told me it's the symptoms that are important. Insist on help. Good luck. X

  • I am sorry to hear that you have had a very unsatisfactory visit to St.Thomas'.....I too was under a Dr there from about the end of 2009 until early 2011, was told I had 'Fibro' and discharged, and told to 'come back' if things progress....which they did from 2/3 'flares' per year to full time symptoms. My GP tried to get me back there but it would have been a long wait again and he referred me instead to my local hospital where I was told straight away that it was almost certainly Lupus-and this was confirmed on my next visit. As the previous reply says.....insist on help and Good Luck x

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