IS my Dads ms diagnios wrong? - Hughes Syndrome A...

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IS my Dads ms diagnios wrong?

dulcie profile image
6 Replies

My Dad and his twin brother were diagnosisied with ms in the late eightys. In the last 6 months i have had severeal Mini strokes or T.I.A and two one sided body seziures. I have been told i have seronegative aps and ct scan and lumber puncture didnt show any eviedine of ms. Is my dads diagnois wrong, or is my diagnois wrong? or it just bad luck he has ms and i have aps, or could there be a likn somewhere?

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dulcie profile image
dulcie
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6 Replies
Suzypawz profile image
Suzypawz

Hi, I don't think we could answer that one, perhaps discuse this concern with the docs & maybe see if they could give both you & your Dad further tests to confirm what you are worried about.

It may be just...as you say ' down to bad luck ' for you all, but it may be worth looking into?

I wish I could be of more help to you, but I do hope you are all ok & hopefully you'll get the answer you are looking for, what have you got to lose by asking for further tests? I would if it was me & my family, better safe than sorry as they say, if it concludes it isn't, at least you checked instead of waiting, all the best to you all x

tassie profile image
tassie

Wise words from Suzypawz

WayneL profile image
WayneL

Hi, Dulcie.

After all this time, what could another blood test hurt?

Make sure that you request an APS search as well.

This will, at least, give you some peace of mind.

Anything is better than not knowing whats going on.

Hope you are well.

Wayne L

MaryF profile image
MaryFAdministrator

I can see your valid point with this, At times APS been in the first place diagnosed as MS, however to re examine this diagnosis would need the correct team and also tests to take place, it would certainly not harm to do these tests! There has been quite a lot written on this. No harm in lightly investigating, and the best of luck with this. Mary F

witch2 profile image
witch2

I can appreciate what you are saying but is hard to prove . My daughter saw prof Hughes many years ago and when I said I had m.e. he told me to go to my go and get tested for lupus as my mother and daughter positive and that is was highly likely I was on the lupus spectrum. It took me ten years to get to a rheumy to have his opinion agreed with as no sign in blood but all the other symptom I have been diagnosed with unspecified connective tissue diseas and get monitored every six months. Hope this helps in some way. It seems if you get diagnosed with one thing despite strong genetic evidence it is very hard to change a diagnosis.

dulcie profile image
dulcie in reply to witch2

thankyou. Im fighing to get a neurologist to see me at the moment, although i have been referred to him three times. Im going to St.Thomas next week and hope to get a more definite answers to all my questions,

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