Hello,
I was diagnosed with APS after a DVT 4 years ago. Recently I’ve been getting more frequent migraines/loss of vision, my doctor has just referred me to a neurologist.
I was just wondering if anyone has had anything similar and what I can expect from the neurology appointment?
Thanks!
What a very interesting owl avatar you have!
Do you work with birds of prey?
Be careful of claws if you are on warfarin...make sure you always wear protective gear! I’m sure you always do.
Where are you located?
Im sure all of your clinic notes have been sent ahead of time.
From there it is very patient dependent depending on how the patient presents. Types of migraines, etc.
We on here are not doctors, but can only share what our experiences have been , and my person experience has been time and time again that is is very patient dependent.
The more specialized the field, and the better qualified the physician, the more this plays out in the clinical and hospital setting.
Make sure to make a list of all of your questions ahead of time. I suggest by category. ( in Roman numeral format.
All the best to you, and do come back after your fist appointment if we can be of further assistance.
Hi, I would write your medical history and your symptoms to date, in bullet points, so you can firmly say what is going on. In case you need another specialist, later on, we have UK ones under 'pinned posts' over on the right hand side of the forum, also some on here: ghic.world/ I hope your Neurologist is clued up about this disease, some are woefully behind with their knowledge. MaryF
Hi Zoeb22,
You do not say if your "Doctor" who referred you to this Neurologist is a Specialist of autoimmun illnesses and if you are on any anticoagulation-drug as to your DVT and APS-diagnose 4 years ago.
We need a Specialist who works with people with this illness daily and knows how to treat APS. That is very important for us!
You mention migraine and loss of vision which are some neurological symptoms of APS.
I live in Sweden and I had those symptoms before I was properly anticoagulated with Warfarin with an INR around 4.0.
You can read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about her neurolgical symptoms. A good book also for relatives to understand better our situation.
We have noticed here during the years, that the Neurologists do not always "get" that APS is about too thick blood that has to be thinned! Usually a Rheumatologist or a Hematologist are knowledable of APS. Good Luck to find a Specialist for your APS!
Hi I’m Debbie! My Neurologist put me on Dolevent for Migraine! I had one for 6 weeks! It helped! Got it on Amazon
Hi I had loss of vision and pain back in 1995 and was diagnosed with optic neuritis. Luckily I had private health cover from work so it got diagnosed pretty quickly. A doctor at Moorfield eye hospital in London told me to go home, clean my eye with a Q tip and stop wasting his time.
Perhaps a MRI will be needed which apart from the noise is fine - I’ve had several. With regards to a neurologist I can only wish you luck and hope you find one who is nice. I’m still hoping to find one after 23 years - they aren’t the nicest of people.
I also also had transient loss of vision and headaches. I was diagnosed with Intracranial Hypertension by my NeuroOphthamololgist after she saw Papillodema (swelling and bursting of vessels near the optic nerve). My symptoms were resolved after anticoagulation with Coumadin and Aspirin.
Here is an article regarding APS and Intracranial Hypertension
Migraines pre APS diagnosis and treatment? Me too. Migraines went away after I started warfarin. For the first year or so I avoided my trigger of bright lights, but I think now that avoidance was more out of habit then necessity. Good luck!
Very different form of migraine?
Hemiplegic migraine
Migraine and passing out
