Ive had symptoms I realize for a few years , mentioned them to neurologist and hematologist and rheumatologist, but we have thought they were due to my autoimmune blood clotting disease, antiphospholipid Syndrome. ( APS. )
I did not understand, nor did they, why my brain felt bruised and tender after the migraines left.
The penny dropped when my temporal artery stared visibly swelling and bruising blue and my chest vein turned blue/ black…
Loosing vision when this happens. Speech goes, eye drops. ( I went to neuro for TIA symptoms.) was given infusion of decadron.
The problem is no one is actually treating.
I have a call into my rheumatologist, and opthomologist explaining the urgency. No calls back.
I have an emergency work in with my GP next week.
What kind of specialist should I see?
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KellyInTexas
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Dear Kelly, the Nicholas Gonzalez Foundation in New York take an overall view and don’t split the body up into specialities with no one to put together the whole picture. They’re not mainstream though so make your own choices. I’m just passing on what I learnt over years. Don’t be put off by the focus on cancers, they deal with serious illness in general by looking at the imbalance underlying the immune system thegonzalezprotocol.com/gon...
In UK it would be rheumatologist and/or ophthalmologist- hopefully same in US, but there they do seem to pull in all sorts of disciplines.
But whoever it is, it should be treated as a medical emergency - especially as you are experiencing sight disturbances.
No response is abysmal - and have to say from personal experience waiting until next week is too risky…you’re lucky nothing worse has happened over the last 14 days - you need immediate attention ASAP.. ED calls.
Temporal arteritis and other large vessel arteritis is generally managed by a rheumatologist. But as DL says - this is a medical emergency even if your haematologist didn't realise. The ED is appropriate on a Friday and on the weekend.
Since your symptoms are TIA/potential stroke WHY are you being ignored?
PS - did the haematologist call it arterial arteritis? How strange - arteritis is inflamed arteries by definition. If it were just inflamed vessels it would be vasculitis
Small vessel vascilitis affects vessels smaller than arteries - so when the temporal artery is involved it isn't small vessel. It just so happens the temporal artery is obvious being superficial but if the temporal artery is involved then it is more likley arteries in the truck are involved - large vessel vascilitis and that will e where the better informed gastro will have met it. Tempora; arteritis is an old-fashioned and rather dated term.
I wonder about going to Cleveland Clinic? You might need several specialist. Would your hematologist refer you to Cleveland Clinic? This is very serious. It probably needs more attention than what is available in Kerrville or even San Antonio. I am here for you.
Cleveland clinic is not great with understanding APS… 😕 that’s the gig there. Several on our Hughes-APS forum have had poor results.
I think once I can get call backs I’ll get what I need.
I’m ok right now as I’m not in migraine mode. ( now I understand why they have not been responding to higher anticoagulation.)
I had a scheduled opthomologist appointment yesterday, only to go in and be told I as not on the schedule! ( they apologised and said it had happened a lot lately to several patients and they were working it out.)
I explained I had a semi emergency situation and told the receptionist exactly what it was. She said the doctor would likely call me yesterday or today.
No call.
I waited until the end of the day today to see what would happen with that before I posted here.
Too bad because they are great with heart and vascular issues. Many TOS patients go there for help. Mayo clinic has very poor outcomes for TOS patients because they do not believe it is a real diagnosis.
I am sorry Kelly. Hopefully one of your doctors will find the best help and treatment for your diagnosis soon. I will be thinking of you!
NOT semi-emergency - EMERGENCY. Just like a heart attack or stroke - the potential is the same. Especially with APS I'd have thought, too easy for a clot to block an artery narrowed with inflammation/
Hi Kelly here in UK generally rheumy that deals with temporal arteritis. As others have said urgency is the key so please get yourself to ED if possible to prevent sight loss. Hope this article is helpful medicinehealth.leeds.ac.uk/....
Trust you get the help and support you need blessings Lisa
Agree with others! Because you loose vision with symptoms you run the risk of it being permanent. Needs to get reviewed and answers or treatment ASAP. If ED visit is the only way, then would do that!
Those lumps in your forehead will be the positive biopsy when and if you get one done for Giant Cell Arteritis, once called Temporal Arteritis. Here in NY, on Long Island, my internists took it very seriously and immediately started the steroids before the biopsy as a closing off of the blood vessel that goes to your eyes is hardly reversible. I have heard of emergency infusion of steroids in an emergency room, where you could also go to in NY. I don't know about Texas. Baylor is supposed to be very good. And they start you on high doses of oral steroids right away. Even though I was started on 60mg Prednisone. A biopsy a week later was still positive. Those hard lumps are blocking the flow of blood in the small arteries.
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