Hello. English is the second language for me please forgive my writting.
I've been complaining from the vision problem, headache, temporal and skull sensitivity for a while now. Due to being young (38 years old) doctors don't belive that I might be suffering from GCA. However, with a huge argument with my Dr. I was finally referred to the rheumatologist. I've explained everything in detail to her and I've asked her for all kinds of tests from Blood tests to diffrent MRI's. surprisingly all of the inflametory and auto immune blood tests came back normal but one of the imaging was kind of abnormal. The carotid MRI Angiogram without contrast indicated that,
Within the left carotid bulb, there is probable flow related artifact which simulates hemodynamically significant stenosis. 306-11.
A carotid ultrasound is recommended to ensure that this finding is artificiall in nature.
But my Dr. Just dismissed this finding and didn't order the ultrasound since the one I had two mounths ago was normal.
But it's been almost a year that I am having pain in the whole left side of my face, skul, temple, eyebrow, eye, inner ear and side of the neck. When I bend over to pick up something, or bend my head to eat, to read or when I lay on my back or on the left side I feel the pain and my left eye gets painful. Also the vision in the left eye changes. A dark shadow cover the vision and until I do not sit straight up it does not go away. I am believing that I might be having arteries inflammation that does not show up in the blood tests or in the MRA.
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mel-21
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Sorry to hear you are having so many problems with your head. Yes you are young, but although it's unusual it's not out of the question that it could be GCA. However, in GCA the pains are usually bilateral (both sides of body) and if I read your post correctly your problems seem to be mainly on your left side, which maybe a sign it's not GCA. Again, not conclusive proof, but maybe why the doctors are dubious.
Sorry I can't help you with any other diagnosis, but I'm sure others with better medical knowledge will be along shortly to offer advice.
Perhaps a referral to an ophthalmologist or neurologist might give you more information.
Thank you so much for you reply Dorsetlady. I know I've been asking and telling you guys the same story but the pain and itches are very real. I would never dream to come up with such a story but it hurts me when doctors think I'm over reacting. Well it's my vision and brain that are in danger how could I not be worried. It's 5:46 am here in California and I could not even sleep for an hour due to the pain. I could not put my head on pillow beacuse it's painful and the pain effects my vision. I mostly sit and sleep. Even MRA showed something still they don't take any action.
Hello . I was diagnosed with GCA and PMR in December 2016. I would like to mention that in my experience the pain was only on the right side of my face, jaw, ear and head plus the scalp sensitivity and pain on back of my skull. The pain on my face and skull was horrendous. I could not chew or sleep well for the pain. I kept trying all sorts of different pillows to easy the pain, and trying have some sleep, all with no luck. My GP suggested I should see my dentist considering that for many years I have been a teeth grinder. I started getting treatment from my dentist but did not complete it as things got worst and after some blood tests results my GP sent me straightaway to A&E. Stayed in hospital for 2 days and at this point I was diagnosed with GCA and PMR. All my aches and pains started mid November. I thought it was flu. My first blood tests results showed vitamin D deficiency.
Things did not get better, so here I am now on 20 mg pred. Started with 40mg. I do have some bad days, not so much pain, but the fatigue I get some days it is just too much. This week I started going to Aquarobics and also doing Pilates. I hope I feel better by doing this. I want to keep active as much as I can. I will try ...it's all I can say.
I did say pains are usually bilateral, which they are, but I've been on this forum long enough to know that not everybody confirms to the classic symptoms - and that's why our diagnosis often takes so long!
Exercise is good, but you must give yourself time to recover afterwards- everything takes longer than it did pre GCA. Sometimes you just have to give in to the fatigue - don't fight it. It is what it is!
If you have had an MRA then any abnormalities would almost certainly have shown up - and the number of tests you have claimed to have had in the past would have shown something. You don't have GCA so there really isn't much that any of us on the forum can do to help you.
I can't wait to see the eye Dr . To see if he can shed the light on this issue. My sister was telling me that he might ask me to do contrast Angiogram to find out the blockage. I've never done this procedure. Will this procidure show anything like inflammation. Is it safe to do.
Nothing. They could not tell me that what's wrong with me at all. Even though the MRA showed some abnormalies which I included up in my post the still dismissed my case. Honestly, I dont understand that what's going on with me anymore. I'm getting crazy over this issue my life is up side down. I've never experienced anything like this before. It's weird, painfull and scary. It hurts me to the bone when they don't believe me. 😢
I don't know how long it will take the doctors to help me. It's been almost ten mounths of me complaining to them but still couldn't get thier attention. For this reason I keep reasechin on line and the only thing that I get is GCA. When I take my reaserches to doctors they just laugh at me and tell me that I am to young.
Ok then if it's not this or that then what is it that it's symptopms are so close to GCA. Why should I have all this pain every day. I get no answer from them. 😢
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