need help pls

I've had a neurological condition for 8 years or maybe longer and was diagnoised with mild MS last febuary after a bout of diplopia. The neuro said ms ms is abnormal as it is very slow progessing and I have no disabilty.

I am not convinced as MS does not explain most of my symptoms. I have livedo reticularis frequent migraines, chest tighness, cold circulation, cold feet and most of my sypmtoms worsened when I started to the combined pill.

I have one miscarriage at 10 and a half weeks and plalcental abruption with .and low platlets twice. I recently have had vertigo which was really bad but I have seen improve greatly but only when I take asparin daily. This is not the first time my symptoms improve with aspirin.

Any advice on how to proceed because I've had 1 test for APS in the past that was negative but I have found that is is best to look at the sypmtoms to best judge each case. I have not had a MRI as I have a needle in my knee from a childhood injury

Any advice would be apreciated thanks.

7 Replies

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  • Your symptoms sound very much like mine I have (to my knowledge) never had APS blood test but was diagnosed clinically I was tested for MS (lumbar puncture) which was negative after countless miscarriages and stillborns placenta abruption had MRI scans and was diagnosed with sneddons syndrome I also have livedo reticularis, migraines raynauds. iam on warfarin.

    Think you need to ask gp or neuro to test you for aps/sneddons.

    sharon xx

  • Hi, I am sorry you are suffering so rough.

    I to had query MS some 18 years ago, I spent 10 years in a wheelchair when they then diagnosed mylytus - however, there are other blogs, comments on here that will show you, Hughes can be misdiagnosed as MS. Now I can't say your diagnosis is wrong, but I would suggest you see if you can either be re-tested, maybe even referred to St T's if you are in the UK. There are also people that show negative on the blood tests but who do have Hughes, it is called seronegative APS - check out he Hughes site hughes-syndrome.org/ for more info.

    Try and be positive, but don't give up, see if your GP will refer you elsewhere for more tests.

    Keep well, smiles

    :) Lesley

  • Hello there and welcome, your symptoms do sound very familiar, and some people do get a wrong diagnosis of MS in a small percentage of cases. You must try and get yourself referred to St Thomas by your GP or team, or if you wish a private one at London Bridge with either Professor Hughes or Professor Khasmashta, who has a speciality with what are known as seronegative hughes patients - I myself are one of those.

    Please keep us informed of your progress, and as mentioned above do have a look at the Hughes site, as you can look at the medical papers on there and even down load them for your GP or team.

    Best wishes. Mary F x

  • Hi hon

    Welcome and glad you found us, sorry to hear what brings you here and for your losses!!

    Where are you, not specifically but if you in the UK, ideally St Thomas's is the place to go!!

    Regarding bloods for Aps being negative, there are quite a few patients with sero negative Aps on here! Diagnosis based on clinical symptoms, which you do seem to have quite a few of!!

    Maybe a haematologist or rheumy more local to you, other members in your area maybe able to help with that!!

    The pill for me was a big indicator as I had a serious reaction too!!

    Be pushy hon, arm yourself with information, Hughes foundation website on hughes-syndrome.org is a great source of factual information!!

    I hope you get some answers and treatment, Aps pregnancies with correct treatment, ie aspirin and heparin injections, are much more successful.

    Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • When I read posts like yours it just mirrors what I was feeling a year or so ago after my stroke but with no answers as to why I had it. All my tests had come back negative and was told just one of those things! Well strokes are not just one of those things they are a bloody big deal for the person who has them!!

    For me it was worse because for six months I had been trailing doctors trying to tell them about growing symptoms because I could just feel them building up, but the eyes were rolling and the heads were shaking and that look of "its all in her head" was coming over them.

    As Mary says you are a classic case of somebody who needs the expertise of somebody like Hughes or khamashta who are experts in the seronegative side of APS. As was said at the Patients Day a month ago we have a different antibody which is not picked up on the blood tests and which makes it difficult for main stream Doctors to diagnose - worse, and dangerously so they dismiss us.

    I don't know if you have it or not but what I do know is if there is any chance that you do its important that its diagnosed correctly so that you can be put on the correct meds. Do what your instincts tell you, but if you can possibly afford London Bridge go there, if not badger your GP for a referral to Khamashta at St T's.

    Good Luck!

  • Thanks every1. I will asked to be referred to a neurologist and hopefully get a real diagnosis rather than a guess.

  • I was diagnosed with mild MS in the past. A Rheumatologist said I was misdiagnosed. I have Primary Antiphospholipid Antibody Syndrome. You need to see a Rheumatologist and be checked out.

    Good Luck!

    Jean

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