HI I HAVE HUGHS SYNDROME CURRENTLY ON NO MED BECAUSE DR SAID TESTS NEG AND I A IN REMISSION HAVE NOT TAKEN MEDS FOR 3 YEARS

I AM WORRIED LATELY AS I HAVE BEEN EXPERIENCING SYMPTOMS THAT ARE CONCERNING , I AM HAVING BURNING PAIN IN BOTH KNEES ,DIZZINESS/VERTIGO MUSCLE TWITCHING , CRAMPING FEELING IN THE RIGHT CALF AND INTERMITENT CHEST PAIN AND NUMB SENSATION IN LEFT HAND AND ARM SHOULD I START LOW DOSE ASPRIN ? AS MY DR SAID ITS FIBROMYALGIA AND I DONT NEED TO PLEASE HELP AS I AM SCARED I DONT WANT TO HAVE A CLOT OR STROKE . IS ANYONE ELSE HAVING THESE SAME SYMPTOMS I AM 40 YEARS OLD. I WAS DIAGNOSED IN 1994 WAS ON MEDS ON AND OFF AT DR SAY SO ANYINFO WOULD BE APPRECIATED. I AM ALSO HAVING SEVERE LOW BACK PAIN AND UPPER LEFT SIDE ABDOMINAL PAIN BUT ALL THAT SHOWED ON CT WAS ENLARGED ADRENAL .

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  • It sounds as though you are experiencing a flare. This may have been brought on by stress and the worst thing is to get more stressed worrying about it. You could try taking low dose aspirin for a month and see if it helps. It is unlikely to do you any harm unless you have problems with stomach ulcers. If you have just been seeing your GP you should ask to be referred back to a rheumatology consultant. GPs dont have any time or the experience to discuss these sort of symptoms. I went to my GPs with a list of similar symptoms and I cried in front of them because they didn’t offer me anything to help. They knew I was on the waiting list to see the Rheumatologist and said that I would have to wait because they literally couldn’t do anything for me. I had to wait 3 months.

  • Sorry to hear your troubles, anybody with a history of APS needs the correct monitoring by a combination of GP or consultant or both. Can you be referred to rheumatologist,and could you press for an appointment to St Thomas' or could you fund a one off private one at London Bridge. (taking your latest blood results).

    Asprin a definite in the mean time... always on full stomach. Also make sure they look into your thyroid function, many of us on here have multiple conditions. I hope you get some helps soon, and if overwhelmed by lack of medical input do try and take a reliable relative/friend along with you for morale support. A lot of us on here, including my own family understand the difficulties of treatment such as this. Let us know what is happening, there is plenty of support on here. Mary F

  • I really do not want to upset or worry you anymore than you are already BUT being somebody who was fobbed off as having all things fibro when my symptoms were growing towards my stroke, I urge you to stand up for yourself and insist that you have an immediate appointment with a rheumatologist, as Mary says or referral to St Tommies and in the mean time just take 75mg of EC coated aspirin as this will at least protect your tummy. If you find you are getting a bit of GERD you can get Omeprazole over the counter although it would be better via your GP.

    Last night I was doing some clearing out and came across the letter from the neurologist I saw too months before my stroke last year. I went to him because of the growing neurological (I thought ) symptoms. He did all the blood tests including those for APS and other rheumatoid and autoimmune conditions. As all had the word negative by them his reaction was to just dismiss them. He then went on to the physical examination and admits that some things were not normal but then puts those things and the symptoms I had described like balance and dizziness down to FM. In his footnote to my GP he says that he wonders if one of the drugs that I am taking could be responsible for the difficulty in word finding and cognitive problems as in his experience that is not something he finds with fibro. At no time was a brain CT thought necessary and he obviously never looked at my clinical history and thought hmmm but she has had a PE and miscarriages, she does have a background of chronic headache (plus a load of other symptoms) she could have seronegative APS) BINGO!!! No for a so called experienced neurologist it was too much to ask that he put together all of the dots. Now of course he says "well looking back it all makes sense"!!! Er.....I now have brain damage to prove that!!!

    I don't know what we have to do to get across to these medics that NOT EVERYTHING IS FIBROMYALGIA!!!!! But as you can tell I am very very cross about it. Not only that but I will bang on to whoever I have to until they are totally sick of me so that no one has to go through what I did. It was totally unnecessary and preventable.

  • Good for you MF x

  • well said HP!!

  • thank you so much for your reply i will make an appointment asap and get a referral to an immunologist. i am sad to hear of you ordeal and your continued struggle i hope that you are improving each day my current immunologist also asked me if i was depressed and he wanted to put me on meds but i wasnt i was worried about what i was feeling i just wanted to ask u about your stroke as something happened the other morning when i was in bed laying still and it really scared me all of a sudden a very quick flash happened and everything went black but only for a fraction of a second then i went really dizzi i got up to tell my husband and when i got up my left hand went numb and i had tingling under my underarm it only lasted for about 5 minutes but now i am having a numb feeling at least a couple of times a day could that have been a sort of mini stroke as my memory is getting really bad and i am finding it hard to put a name on things when i am having a conversation etc ihave got some asprin today and i will start them now thank you for your reply it has made me more determined to seek help its was just that when your symptoms that you are feeling are constantly dismissed you start to feel stupid when u keep on going back and then you have to leave there no better off i guess you would understand that better than any one i willkeep in touch and let you know how things are take care

  • I agree with the others you need to take action. I was fobbed off for years and later found out I had been having strokes.

    I had positive APL bloods but was told by a Neurologist that I didn't have enough symptoms for Hughes Syndrome, which I had never heard of. I looked it up and realized that I had been complaining of most of the symptoms for years. I also realized it had killed my mother.

    I had to go privately to London Bridge and the rest is history so to speak, I now take daily Clexane and am seen at St Thomas'.

    I was advised to take soluble asprin (best is a quarter or half of aspro clear) just before a meal.

    Hope this helps

  • Hi Sue

    I am surprised you take Clexane AND Aspirin. I was told not to take aspirin or ibuprofen which is really annoying because I have no anti inflammatory I can take now. Who told you you could do that was it St T?

  • Hi HP I agree i was told i was not allowed to take Neurofen etc so i would also be intrested to know sue.

    paddy

  • Hi Ains,

    Welcome to the group i am sorry it is not under better cirumstances but as people have said above get an emergency appointment with your GP and get him to refer you to StT or as suggested London lupus unit or there may be a another specails near you but you need to get checked by someone who knows what they are talking about. Also have a chat with your GPabout taking asprin as suggested but you need to leave that appointmnet with a referal to a APS specialist.

    Please do keep us informed as to what is happening.

    Paddy

  • I posted a question earlier and then answered it myself all in one go Lol!! The point is it was about taking Aspirin with Clexane. It seems with that particular low weight Heparin you can take it with Aspirin. I learnt quite a lot about all the different Heparins today, what circumstances they are used for in the different types of APS situations. The different anticoagulants have different applications so you cannot compare them.

    Neurofen is ibuprofen which thins the blood. If you are on an anticoagulation therapy then there is an increased risk of bleeding. Its all to do with the make up of the anticoagulation drug you happen to be on and the way that it works, as they all have a slightly different mechanism.

    Aspirin is a sort of base line anticoagulation thats used on its own and quite successfully. I think but cannot say for sure that once somebody has a thrombotic event of sorts then other anticoagulation drugs are used either in combination like Clexane or then you move on to warfarin or other low weight heparins. Good old wiki has a good page explaining it.

  • Hi HP! hope that's not too personal!! I spent a long phone call with my with GP explaining that I could take Clexane and Prasugel (replacement for Aspirin for those of us allergic to it) and Aspirin with Clexane is the therapy use in pregancy for Hughes and Lupus patients. I spent ages on the net reading about how blood clots, absolutely fascinating! Left me with a crushing migraine and I can't remember any of it but I know it was very interesting :)

    Have a lovely Christmas

    Love

    Sharon x

  • BTW I rather like HP!! It conjures up HP sauce but then I am rather saucy!!

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