where do i go from here????

Hi all

today i received my blood test results and both were negative. im not sure where to go from here. I have a spect scan within the next 8 weeks but still awaiting appointment. i would be interested in your thoughts. Some past and ongoing problems are:-

1. thoracic outlet syndrome -had unsuccessfull operation 15 years ago.

2 .dvt in my leg 20 years ago.

3. migraines as a teenager. now returned - ongoing

4.1 miscarriage and 1 bleeding at 24 weeks - 2 sucessfull full term

5. acid reflux - was on omeprazole for many years.

6. eye problems - blurred/double vision, weekly although not every day - ongoing

7. suspected tia's x 2 - last one a few months ago.

8 .very bad memory loss - under investigation for dementia - ongoing.

9. language difficulties - cant get the right words out or forget words - ongoing.

10. patchy red/white skin on hands and legs - ongoing.

11. painful and sensitive skin to touch - ongoing.

12. pains in stomach about an hour after eating - ongoing.

13. restless legs - ongoing.

im sure ive missed out a few but thought id give an example of health issues. as stated before my dr was very very reluctant to do the blood tests and to ask her for a referral is going to be somewhat of an ordeal although i am awaiting specialised mri scan for the suspected dementia. last mri scan showed that my brain has shrunk and neurologist said this was normal!

i feel at my wits end! any help/advice appreciated.

Linda x

14 Replies

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  • Hi Linda

    Welcome and glad you found us. :-) :-)

    I think quite a few of us can relate to your story hon. A fair few Gp`s and neurologists struggle with Aps, some rheumies too, especially when bloods come back negative, however there are quite a few people on here who have been diagnosed with Aps on clinical symptoms alone. You certainly have a familiar list of symptoms. Hence the diagnosis would be sero-negative Aps, bloods may go positive later.

    Be persistant with your gp, could also print some info from Hughes foundation website, at hughes-syndrome.org.

    If you could get to London Bridge to see Prof Hughes would be the answer, but not always practical or affordable.

    I think Dr Annielle Young (not sure I got name right) but hear she is very, very good.

    My haematologist didn`t really understand much about Aps but thank goodness did refer me to St Thomas`s in London, Dr Cuadrado there was fantastic..

    Don`t give up hon, it`s a battle to diagnosis, but with the right treatment we can feel better and safer.

    Here when you need us.

    Take care gentle hugs Sheena xxxxxxxxx :-) :-) :-)

  • Hi Linda,

    Welcome to the group

    All of those symptoms sound like symptoms of APS!! To get a diagnoiss of APS it is documneted to say that the diagnosis can be made by symptoms alone. So do not worry about negative blood tests and ask to be refered to St Thomas.

    If you need help, support or just want to rant we are here

    paddy

  • I am seronegative APS and Sjogrens Syndrome. If you can ask and get a referral to St T to see Dr Khamashta who co-wrote the study with Prof Hughes on seronegative APS. He is very good and will understand your symptoms. Of course Prof is the person if you want a definitive dx but you can then be transferred to St T after that.

    Whilst this is all going on are you on any anticoagulation, aspirin maybe? You should be, even if its a baby aspirin every day its better than nothing until this is sorted.

  • HP has a good point ask about anticoagulation and even a s a stop gap you may wanto justtake the over counter ones as a start, Dr K is a very good doc or Dr D'Cruz is another.

    Paddy

  • Hi there and welcome.... also join the club. I have a similar history and am also seronegative, in fact I fail almost all tests, but eventually pass them, well some of them! Kind Regards Mary F

  • Hi Linda

    Welcome to the sero negative club!!

    my experience was that Prof Hughes was the first person to take me seriously, and a couple of years later, ( on the right treatment), I have my life back, ( and have now ways of dealing with all the confusing, multiple symptoms) so take heart from all our experiences, there is light at the end of the very dark tunnel.

    kind regards

  • Hi - my daughter who is 16 years was diagnosed with aps positive and then recently negative, she has headaches etc and currently in hospital as she has caught a bug and it double the trouble being as she is on Methatrexate. Yesterday told that she would have a scan on head before mid day - still awaiting, then they tried unsucessfully for lumbar but the doctors did not do it. Her temp is up 40 and they think it is to do with a bug despite having all the jabs ready for winter etc. Anyhow my husband is sleeping at the hospital as being myself on immunosupps and all that he said keep well away, but trying to tell him to tell the nursing staff that they are suppose to be doing the scan etc is like talking to a brick wall. I told him, we want it all sorted before she comes home otherwise it will be trekking backwards and forwards to the hospital and as she has A levels etc. Anyway coming back to negative - she was positive for a about 3 times and the last nothing but she still has the symptoms and is being treated as though she has it.

    If it was not for the heptology department here none of my scans which are supposed to be done by Haem would be sorted so I am very thank ful to them.

    Currently I am experiencing bad pains when eating so I am cutting out bread and eating a gluten free diet. I am due to have an ultrasound in a couple of weeks to see how things are looking in Liver area and also whether there are clots in the abdomin. I love this site, because she can learn so much and realise that it is just not us are imagining it.

    My GP is over protective - my husband dreads it - she tends to send myself and daughter to the hospital if she feels the need, but sometimes I wish that shewould be so over protective.

    Anyway - my rant is over - but need to keep on to my husband about the scan for daughter otherwise it will get forgotten.

  • Thank you all very much for your replies and advice.

    I must admit i was very down yesterday after receiving the negative results - weird reaction but i was so wanting an explanation to all thats been going on for the past 20 odd years health wise and thought this could be the answer to my prayers. After reading your comments i now feel more positive as i so want this to be APS and not early onset dementia (hope this makes some sense to you and doesnt sound flippant).

    I think I might start the aspirin and see if i begin to feel any better - thanks for that idea.

    Its just very hard for me at the moment as i have a very playful 3 year old and am beginning to find it a bit of a struggle to keep up with my wee angel!

    Can i ask another question? how long do you have to wait for an appointment at St T's after referral?

    Thank you all again

    Linda xx

  • Hi Linda

    Know exactly what you mean about prefering APS to early onset dementia, as i had that fear for years, it was only after seeing Professor Hughes ( at the London Hospital), that I recieved the right treatment, and I dont fear early onset dementia anymore. Enteric coated Aspirin would be a great start, found it helped me for a couple of years.

    My experience is a few months to get appointment at St thomas's

  • Hi Linda

    Know what you mean about wanting a diagnosis, I think we all feel a sense of relief, i did it explained the miscarriages, blood clots etc, etc....

    My appointment took about 5 weeks so not too long a wait.

    Take care gentle hugs sheena xxxxxx Yeah:-) :-) :-)

  • Thanks again for your swift replies and for your understanding re diagnosis. i will make an appt with my gp (and take along hubby) and ask for a referral. will also go and get aspirin tomorrow. will keep you updated.

    Thanks again and hoping you are all as well as you can be.

    Linda xx

  • When I looked at symptoms of Hughes I knew that I had it for 50 years, when I was first hospitalised for the rash and dicoordinated arms and legs. Several incidents over my life including 8 miscarriages. I am now in a situtuation of Having Temporal Artritus and on very high dose Steriods which are causing all sorts of other problems including very unstable diabetes. I asked for the blood tests for Hughes and 1 came back positive and the other negative so the Dr's are saying that I may not have Hughes, with my history I know they are wrong. When they lowered the Steriods my artritus came back. I feel the Hughes is the primary problem and until they treat that my artritus will come back, and I feel I can't take these high steroids for much longer. My eyesight has diminished , my sense of taste has gone and I can;t walk properly. How can I get then to treat the Hughes.

  • i only got treated seriously, ( and given proper medication), after seeing Professor Hughes, had been banging my head against the wall before that. now 2 years after starting treatment my life transformed for the better.

    Do feel for you and all you are going through

  • I would ask to see a doc at St thomas if you are able if you have the symptoms and one posative and one negative you need to speak to the specalist.

    paddy

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