I went to my primary care and told him my twin brother, a nurse practitioner, had diagnosed me. But I really did, and asked my doctor to put me on Prednisone, which he did.
so what do we do about the physicians who are offended that you looked up your symptoms online and come to them with queries about what you might have? this seems to be very common. Dammed if you do and dammed if you don't. Most physicians freak out when you tell them you looked up some of your symptoms. I'm going to get checked as honestly I've had these symptoms come and go for a while now, but last night the headache, neck pain, facial pain just was too much. I get severe squeezing pressure down my neck that goes behind my ears and down my carotid area too and just behind my jaw, might head worse headache on one side over the temporal artery area but squeezing constriction type pain down both sides of carotids. I've had elevated CRP (no cause found) elevated alk phos (no cause found), no anemia though, chronic cough for a year now (nothing found on xray), really bad hip pain for 2 years, severe muscle pain and joint pain (no RA found). I get fleeting weird feelings in my right temple area like something just passed through the vein suddenly then it goes away. I get dizzy, super blurry vision... you name it but I KNOW when I go to see my doc to ask about looking into this they're going to say "don't believe what you read on the internet, we encourage people not to do that". LOL. Laughable. Medical centers need to realize people try to sort this out a bit on their own so it maybe shortens the time to diagnosis, not because we think we're know it alls. Be well everyone. Keep doing your own research, half the time it saves our lives when doctors don't twig onto something!
Ellen, here's what I say, Shame on the physician who doesn't want to listen to their patient. How know's you best? You, of course. You know how you feel and know when something isn't right. I run from a physician who won't listen and learn along with me. Find a good neurologist first and foremost, I say this with authority because I have just been diagnosed with Giant Cell Arterisis and my PCP just didn't have the scope BUT he was smart enough to refer me to the neurologist. They will listen and get you set up with the proper testing, CTA head/neck scans, ESR blood tests, and like me, a bi-laterial temporal aterery biospy. Most of all don't waste time because you eyesite is at stake. If this disease progresses, and it progress quickly, you can lose your sight PERMANANTLY! Plus, you are at risk for inflammation of the other arteries in your body, carotid, hearts, etc. because this disease is auto-immune. Next, you need a Rheumatologist who will help mange the disease with a short term course of steroids and tests. Ellen, PLEASE damn those physicians and get help now.
I'm a recently-graduated MD (watching videos about rare diseases as memory anchors for my board exams). Research shows that patients who are actively involved in investigating their illness/treatment and advocating for themselves have better outcomes. Yes many doctors do get offended when patients google their symptoms, it can make it difficult for us when there is so much misleading information on the internet. My opinion is that patients should read up on their illnesses, but do your best to look at reputable websites and have a healthy skepticism when researching online (don't believe everything you read, realize that many are false). Most importantly, have a doctor that you trust with whom to discuss what you read. Hopefully they can help you make sense of anything that is confusing. At the end of the day doctors are human beings; we don't know everything, we forget, we miss things, and we make mistakes. Doctors miss things all the time, especially when an illness does not fall into their speciality. Doing one's own research can really help a diagnosis be made quicker in the case of a rare disease. Do what's best for yourself, it's not about your doctor's feelings.
hemotologist scheduled me a temporal biopsy fairly quickly after a high sed rate and c reactive protein test result and im 30 . i dont get the crazy symptoms but the day i went to the hemo i told him about a pain in the eye socket and a head ache coupled with brain fog and boughts of vertigo/ loss of balance .
I had seizure early last year. I have all symptoms of temporal arteritis. A biopsy is being scheduled. I was told i probably did not have temporal arteritis last year. My vision is worse, i have had sharp pains in the top of my head, pain in jaw, and trouble chewing and soreness on scalp. This disease is terrible. I do not know my body. Hope i can get help soon. Everyday I wonder if I am going to have a stroke or lose my vision.
I agree seizures aren't generally a symptom of GCA. However, GCA generally won't just go away unless you're on a physician-supervised medication treatment plan. @@letitiamarshall8661
I can see as long as I don't eat fat. If I do, my eyes go blurry and my eyelid droops. It's scary. I have lost vision in one eye for days. I won't take prednisone to treat it, it's a very dangerous treatment. I wish you the best
@@malaynaschulthies1087 I have PMR and now I'm beginning to have the symptoms of GCA, going to see my doc this week. I'm on a prednisone, 5mg to treat my PMR but I was given enough for 21 days and then stop. I will not take higher dozes of this med. How are you doing now?
My doctor said I have GCA because my jaw was hurting but it’s not like regular pain it’s when I open mouth I feel the pain as if my jaw shifts and moves like it’s dislocated especially when yawning or eating and the doctor said I have it now I’m kinda wondering if I should have talked to my dentist
Hi just been told I have Gav now on medication pain is bad but you have to try your best and hopefully get better thinking of yous that have Gav irene x
Can MRI miss this ? I had all the symptoms except jaw pains but MRI scan was clear! It’s seem like my left temple will explode and it’s affecting my left eye .. what should I do?
If I eat fat my eye will droop and whichever side chooses to droop, that nostril will run with the tears from that eye and that eye will burn. The eyelid will not open or respond. I cannot eat any fat if I want to be able to see
Once diagnosed and the doctor begins your steroid treatment, it can take 1-2 years for healing. However, these symptoms may come back and cause the same issue again. Regular check ups and not taking your symptoms for granted will help you!
Just been diagnosed by this. Have had symptoms for 3 years. This year it started with vision loss. I have loss all vision in my left eye. Does anyone know if the vision loss is permanent? Am 73 year old female
I am sure I was diagnosed as having an ischemic stroke and put on stations and blood thinners. After two years the pain has returned with a vengeance and it feels like my head will explode. My jaw ,war and scalp hurt, but my left temple is the worse pain I have ever experienced. Try and see a doctor is like winning the lottery ! The doctors have given up on seeing most patients in England and it feels like we are in the middle of the Amazonian Forrest ! Shameful. If you are over 70 in England you might aswell be considered as useless and everything is out down to age. OK, but that doesn't prevent an old person from having pain and all very disruptive symptoms, does it ? I am at a complete loss as to what to do. Hospitals ? Ha......same problems . So when an aneurysm or a strike strikes me it will be to late. Yes, I value my life and I cannot see why I shouldn't just because I am old.
@Conspiracy Forecast I was only diagnosed not long ago after suffering with this for 2 years and I’m only 38 years old. I had migraine type headaches on my right side temple that was really painful and tender to touch, pain in my jaw when I chewed, the pain also traveled into my shoulder and into my neck and I also suffer with blurred double vision in both eyes that hasn’t gotten any better even after starting prednisone. I hope you have better luck mate🙏🙏
@@nadinearroy8586 damn sorry to hear that. I have pain in left temple slight double vision in left eye. My eye doctor said im too young to have it, Im 50. I didnt like his answer. My pvp did two blood tests he says i dont have it, but wants me to do an Mra. I will get that next week. Been fighting this left temple for 10 years now
Prednisone is the devils pill , it is an anti inflammatory but can change the person's personality , messes with your mind .....i don't know my partner now
