Fed up

hi, will try to condense this,ten years ago started experiencing both joint and muscle pain and fatigue,gp said nothing wrong, then started falling asleep all the time and having periods where i would mentally wake,ie could hear what was going on around me,but couldnt move, speak or open my eyes,after some sleep disorder tests i got sent to the lupus unit and Dr D,cruz diagnosed me with APS,I also have a diagnosis of fibro,by another gp,,was under lupus unit for a number of years,then a different dr at lupus unit said i didnt have aps,saw Dr D,Cruz again who said i do.fast forward to today, symtoms now, pain, fatigue, memory loss, slurring, stuttering word finding difficulty,sleepiness, weakness in arms, spasm in arms ,so whilst Dr D,Cruz was away another person at lupus unit said i dont have aps and signed me off, no more appts. gp says not to bother with any more tests or refferalls but to learn to live with condition, oh, lady at lupus unit also says i dont have fibro,, I am pretty sure i do have both aps and fibro and also think i have sjorgrens. Dr d,cruz thought so at one point and did a shirmer test, bone dry, but bloods said not,, dentist has given me prescrription for dry mouth also,oh, also my legs and feet keep going purple with scares me.

12 Replies

  • Hello there, what a shame a different doctor saw you, you need to muster some strength and write a detailed and to the point firm letter addressed to the original physician Dr D'Cruz explaining hat your care seems to have gone wrong, and the diagnosis with him had been left hanging, and that in his absence your diagnosis has gone backwards. You can always get hold of the secretary's email and address this to him. Explain everything, and all current symptoms as this is not good enough! Let us know how it goes. Explain how you don't wish to be left having to complain. Mary F

  • thank you,will do that

  • Your story sounds like my own with many of the same symptoms. I have had that where you cant move a muscle but aware of what is around you, but i dont get that any more.

    My Doctor told me to breath in and out of a paper bag when in that state ! Hmmm how can you get a paper bag if you cant move or shout for help ?

    How disappointig for you to make so much headway & then having to take steps backwrds.

    I would do what Mary has suggested & write to the original consultant. If no joy ask for a second opinion.

    I have the same symptoms of Sjogrens & awaiting tests, i also have Fibro Myalgia.

    On a recent visit to my doctor i also complained of the purple around my feet & ankles i was told it was due to dry skin !

    Do you get numbness in you feet or legs & itching ?

    I was put on asprin but taken off because it irritated my gut but nobody has checked if my blood is still sticky !

    I know it is frustrating for you but we must push for a proper diagnosis it's just not good enough.

    Lets us know how you get on. Jillymo x

  • oh dear,what a silly suggestion re paper bag!the specialist said the purple feet is due to restricted blood flow, I don,t get pins needles, but do get them in arms and hands,numbness too, you must get your blood checked again,they can give you something called clopidogrell that is gentle on the tum. Good luck.

  • We all have to be pro active and chip away at these problems.. and of course often thyroid problems are indicated. Concise, bullet points of information and polite hard pushing. I realized many years ago, that the only person who was going to help myself, was myself...and... it brought about results.. We all get there in the end. Mary F x

  • I'm with you. My doctors have no idea why I'm not feeling well. I feel like not going any more and spare myself from the frustration and save a little money. This is my new plan. Sorry to be negative.


  • Jean please dont do that! I know only too well how frustrating it is - not only to be told you dont have this and that because of endless tests that dont show anything up but also because of being constantly misdiagnosed only for them to change their minds when you actually do pass a test or worse have a Stroke!!

    I know its exhausting but please conjure up some energy and say bugger the lot of them this is for ME! Thats what I do as Im determined to prove the lot of them wrong! We have to stick together on here and we will help you as much as we can. But please dont give up seeing your Doctor if nothing else save up and see the prof as at least he knows what we are all going through! xx

  • Thank you for being concerned. I think I need time away from doctors. I can't bare to go to another appointment and hear that they have no idea what's wrong.


  • Donna the purple legs and feet sounds like blood pooling. What you can do to help yourself whilst you are waiting to sort this mess out is buy yourself some Flight Compression socks or go online and get compression socks to help with that. Your GP should really prescribe them but thats not going to happen until your dx is sorted.

    I am getting really really frustrated with hearing about these differing opinions at St Thomas. If there is one place that should be consistent it is there. It seems to me that there is an undermining on diagnosis of APS by some Doctors going on there which is an extremely dangerous and worrying game to be playing.

    I would write to Prof D'Cruz at St Thomas as Mary suggests and copy in PALS at the Hospital so that it cant be brushed under the carpet. Explain what you have said above about being twice diagnosed but it being overturned by other Doctors only to have it reinstated and then removed again. Put across firmly that you have been left confused and symptomatic but with all treatment withdrawn. Ask them out right will they be responsible if you have a clotting incident because of withdrawal of treatment not only from the Hospital but from your GP who are being advised by St Thomas. My feeling is they wont want to take that responsibility.

    So if your GP says you have to live with your "condition" what condition is it that they say you now have, given that everyone is disagreeing with each other and saying you dont have anything and discharging you....I am confused lol?

    If they are chucking you in the Fibro bucket please please please do not accept this. That is what happened to me and I had a Stroke. Please be firm with these people and insist that Prof D'Cruz diagnosis is reinstated. Can you take a baby aspirin until this is all sorted out?

  • Agreed 100 percent! Mary F x

  • thank you everyone for your support, luckily although the diagnoses has been refuted twice, no-one has ever suggested that i stop the baby aspirin that Dr, D,cruz started me on in 2006,it,s in my nomads,i do use flight socks, they wern,t prescribed but I think I read about them on another forum.

  • And please don,t give up Jean,can you do what I do, and give yourself a little "treat" when you have struggled to an appt and it seems like a waste of time,,daffs are cheap n cheerfull,or you may like chocolate or magazines, just a little pick you up

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