giant cell arteritis, depserate for info to save my life

[dchandler7]

I am 42 yr old, living in toronto who is desperate to get info so I can get diagnosed. I have had the normal blood tests to check twice ESR and creatine and they 2 doctors say I am to young to have it, but I have all the symptoms and nothing shows on brain MRI. Current symptoms after a bad virus they don't know what was, tension headaches on temples gradually getting worse over the past couples and more frequent (few times a day), and sometimes they are followed by TIA symptoms such as weakness of numbness in leg, arm, hands, pins and needles in finger tips, little vision problems, now my jaw and neck are getting quite stiff are times, like cracking and popping, but the usual tension is on temples both sides, extreme fatigue, nauseous, light headed at times. I was very active person before this all 3 months ago, but now if i do anything with a little exertion i get tension headaches followed by TIA (stroke)symptoms.. doctors treating it like a joke cause of age and nothing shows on normal blood tests. Has someone gone through this where it hows normal on blood tests? I am scared to death to try to do do anything active now, and any info I would grateful as you might save my life. So I can go back to doctors to force them to test more.

[SheffieldJane]

Can you ask for a second opinion from another doctor? It probably isn’t GCA at 42 but it is something and now you have an anxiety state on top. It is horrible to be without a diagnosis and to feel that no one is listening.

[dchandler7 in reply to SheffieldJane]

thanks for the reply, i haven't looked to long on internet cause it's hard in my condition but there are younger with this form just looking not to long. can I ask how you got diagnosed? i have all the symptoms but pretty severe, and all starts on the temples. 2 doctors i seen in emergency one said not under 45 and other 50..my family doctor is clueless, so i m trying to get some info, cause it's getting much worse now. Did you have cracking and popping sounds a little, and any TIA symptoms after?

[SheffieldJane in reply to dchandler7]

I have PMR and my diagnosis was made on my symptoms and rapid, positive response to Prednisalone. My blood tests for CRP and ESR were abnormal in the early days, but this is not the case with a percentage of patients.

My neck cracks and pops. I have Cervical Spondylosis, diagnosed by X-Ray and I put this symptom and some pain down to this. I am sorry that you are so scared, I really hope they get to the bottom of this soon. Any visual symptoms should be treated as an emergency.

[Primarose]

Takayasu’s?

[dchandler7 in reply to Primarose]

pretty well same disease, how did you get diagnosed if you dont mind me asking? i had some lovely virus they dont know what it was for like 2 months and this is left overs

[Primarose in reply to dchandler7]

Yes but Takayasu’s occurs in younger patients.

I posted earlier this morning in the link below.

healthunlocked.com/pmrgcauk...

I do hope you can get some help soon.

[PMRpro Ambassador]

I have already replied to you on the patient.info forum so I won't repeat it here.

[Mikb]

I was diagnosed at St. Mikes in Toronto with normal blood tests. They diagnosed me on symptoms, ran a number of tests (ultrasound, CT, MRI) which all were normal and finally did a biopsy which proved I had GCA. I was however 61 at diagnosis.

[dchandler7]

hey thanks for the reply, glad you're doing alright..can i ask how long it took to get a biopsy and do you know of the doctor who actually helped you? i have had CT , mri and normal blood tests, i am seeing one of the better neurologists in the city tomorrow at toornto general but i don't know if they can help.Alot of my symptoms even ER do said it was but dismissed it cause my age and tests were normal..my symptom are pretty bad right now and lost little vision in right eye already and tension on temples has become everyday especially along one side I bite, my jaw, and back of head a little. I am afraid going to turn int a serious stroke or lose total sight

[PMRCanada in reply to dchandler7]

I believe in an earlier post Mikb mentioned the following two Rheumatologists in Toronto:

Dr. Robert Inman and Dr. Dafna Gladman. They can confirm.

Sure hope you get to the bottom of this, quite concerning to say the least.

[dchandler7 in reply to PMRCanada]

thanks