hi, just received results for an mri (as noted above) for my 16 year old daughter who been having chronic headaches for 3 months. The doctor mentioned something about a vascular issue. She has tested positive for ANA (anti nuclear antibodies) and borderline for rheumatoid arthritis.
I was diagnosed with anti phospholipid syndrome 8 years ago after experiencing multiple dvts while on warfarin. Last year was in hospital for ischemic colitis and mesenteric thrombosis. I am now on 22,500 inu of daltaperin daily.
I am very concerned for my daughter and have more questions than answers. Is anyone familiar with the above noted results from MRI and if so , are they connected to APS?
I appreciate any help or direction.
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Hi, the first thing I will say, is that is not a good idea for us to start deciphering possible scan results, as there are variations and of course we are not medically trained. However with your history and now hers it is clear she needs an eye kept on and also an assessment by a specialist who fully understands the implications of Hughes Syndrome/APS. You really need to sit down with whoever ordered the scans and talk it through. I am sure though, that others on here my have been presented with a similar set of worries and may have some experience of this sort of thing.
If the positive ANA is related to Lupus test ordered then, of course Lupus and Hughes Syndrome/APS are sort of cousins, so it is clear that if that and a vascular issue has been detected very close attention needs to be paid to this issue. I think you had the list of our recommended specialists in the past. It is crucial that you are both given the attention to detail that your joint situation needs from the right specialist. MaryF
Mary thank you so much for your measured response. While I am very fortunate to have doctors and nurses in my immediate family, they do not specialize in this area and I have found that casting a line into a wide lay community that is well versed in APS and vascular issues, could render ideas that I can then explore with my family medical team before taking them back to Gp who did referral for MRi. It has been my experience that the better broadly informed I am, the better I can advocate for myself or in this case my daughter. You are such a knowledgable and helpful resources to us Mary.
Great stuff, and you do need one of these, it will not only help yourself and family, but also any current doctors you have including the GP: hughes-syndrome.org/self-he...
Let us know what goes on. next instalment etc etc. MaryF
Sounds exactly like what they said about my MRI, however "sounds like" means precisely nothing - you would need to compare the exact wording on both radiologist reports _and_ be qualified to interpret it in context of the rest of the case file. Anyone on here who is qualified to talk to you about it would, I suspect, not want to do so without seeing the scans and full reports, and would almost certainly not be allowed to do so on this forum.
Headaches may or my not be related to APS, findings on MRI may or may not be related to APS and may or may not be related to the headaches. I have recently been re-scanned after chronic headache for 3 months, result - no sign of further damage on the scans. Consultant neurologist asked very detailed questions about the headache and then told me what he thought they were, and why - not APS, not medication related, slightly surprising cause but actually makes perfect sense. Time, and treatment, will tell if he is right. You need to get to see a good neurologist - might take a few months though.
By the way, you haven't said if you have had your daughter tested for APS, considering the symptoms and family history that might be a good idea, and GP should be able to do the tests. I have had one child tested.
You have not been on this site so long and have not told us about yourself.
I guess you have got APS but you only write about a Neurologist and nothing about what treatment you have got. I guess you have got some positive antibodies as you have also tested your child.
I would like to say this: We have found on this site that the Neurologists do not "get" what this illness is about - too thick blood that has to be anticoagulated in a special range individual to us all but most of us need an INR over 3.0 to be protected from mini-clots or micro-embolies and to feel better also.These tiny clots do not usually show up on Scans. I like several others here have had micro-embolies. I had a lot of neurological issues and have seen several Neurologist before I at last saw my Specialist who is a Rheumatologist.
We need a Specialist of APS (often a Rheumatologist) who knows what to look for as to symptoms.
I have two grown-up girls (age for pregnance) who wanted to be tested by my Rheumatologist here in Stockholm of their own will. They tested negative. I do not know how old your daughter is and if APS is in your family.
I have all three antibodies positive in high titres since 2002.
I do have APS. Dx in July last year after a stroke (TIA) in January, tested consistently +ve for LA. I do have rheumatologists, but saw neurologist first due to the stroke. My experience with neurologists may be different to others' here, but then I presented with a classic stroke visible on CT and MRI.
I do intent to post about my experience, but every time I think I know what I will write, the situation changes - still trying to get my head round a lot of it.
Yes I feel always testing family members! I was DX'd on October 2015 with APS! I pushed my sister to get tested! She unfortunately came up positive! She has thyroid issues, but TG NEVER a blood clot! I wish you the best with you and your daughter!!! GODSPEED
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Brain Fog from The Mighty
What type of Misscarraige does APS cause?
Looking for some help please - not diagnosed
Hughes syndrome at university
Having a seriously bad year
