Ms or AS or what

Hello, guys! I m 29 yrs old.In 2010 doctors sent me to MRI because my period lates for a 2 years.Diagnosed with hyperprolactinemia. Accidentally,they took MRI of whole brain not only of pituitary. They found out that I have lesions on my brain. Diagnosed with MS in 2011 without any symptoms.In 2014 my health getting worst slowly. Fatigue, legs muscles weeknes,balance problems,walking problems...In 2015 I had misscarg. After that I was diagn. with thrombophilia. In jun 2016 I got pregnant (planned pregnancy). In july 2016 had massive PE and 2nd misscar. I am taking sintrom. Did anticardiolipin and lupus test. Lupus anticoag. is 44,5. Doctor told me to do again anticardiol.antib. for 6 weeks. Before,I had everyday headache and my period could be regular only with dostinex. Now no headache and my period is regular. Someone have something similar to me?

4 Replies

  • Hi and welcome, where are you located. MS and Hughes Syndrome/APS have some overlapping symptoms, so this can cause a misdiagnosis, glad it has shown up now, the right specialist can help you immensely, as well as testing for the Hughes Syndrome/APS make sure they test your Thyroid, plus levels of Vitamin D, B12 and Iron also, so as to leave no stone unturned. MaryF

  • Hello and welcome. What you are describing is Hughes Syndrome/Antiphospholipid Syndrome. There are a percentage of people that can get misdiagnosed especially if they get an MRI and it shows lesions on the brain and Dr's then DX MS. Symptoms can also mimic MS. It is therefore VERY important that you go to a well known APS specialist to that they can sort out if indeed you do have what condition because sometimes actually you can have both.

    Its very suspicious however that having had clotting incidents, with positive antibody tests that now your migraines have stopped. This is a classic pattern and shows that the anticoagulants are thinning your blood and helping with the symptoms. Now its important that the diagnosis is confirmed and that any anticoagulation is given at the right dose because with APS warfarin usually has an INR of 3-4.

    If you are planning to get pregnant you need to find a Obstetrician who is APS aware or sadly you risk miscarriages. Warfarin is not an option when you are pregnant so you will need LMW heparin.

    Where are you located so we can help you find the correct Dr?

  • Thanks for answers. I m in Serbia. It s not a problem to see doctor in other country. I ll do vit. D and B12 tomorrow.

    Best wishes..

  • Hello and thank you for your thought-provoking post. I was also diagnosed with hyperprolactinemia during my late 20s, and due to an intolerance to pharmacotherapy (I first tried Parlodel and then Dostinex), I eventually underwent transsphenoidal neurosurgery to remove the offending pituitary tumour, although I was not “surgically cured”.

    Scientists and medical professionals are now beginning to understand that serious endocrine problems can lead to autoimmunity, and I wonder whether my prolactinoma was indeed a catalyst for the APS/Hughes to develop, although much work still needs to be done to elucidate such mechanisms.

    You may be interested in the following article:

    Prolactin's role in the pathogenesis of the antiphospholipid syndrome.

    Although I haven’t written a blog post for a considerable length of time, you might be interested in some information I previously wrote about pituitary tumours:

    One thing I would stress is that it is important that you continue your pituitary care with a knowledgeable endocrinologist, in order to regularly check your prolactin levels (at least once a year) and to also follow up with brain MRI imaging to ensure that the tumour isn’t growing.

    Please feel free to privately message me if this helps.

    Kind regards.

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