I am DESPERATE for diagnosed info so it might save my life
Posted , 9 users are following.
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.
0 likes, 9 replies
TheRadman david34720
Posted
Hi David,
Internet diagnosis can be fraught with risks so take or disregard these comments with the appropriate level of circumspection as you feel comfortable with.
The symptoms you describe do not to me on the face of it seem a good fit with PMR/GCA and you are definitely at the very bottom end of the age profile.
The TIA symptoms are also a bit vague and to me are also atypical and I would be reassured by a normal MRI, even more with doppler ultrasound of the carotids if vascular disease was a significant risk in your case.
If things have followed a bad viral type illness you might be suffering with chronic fatigue syndrome which is now coupled with a severe secondary stress response given how much this illness has disrupted your previously active lifestyle. I suggest this because you describe the headaches as bilateral tension type and the nausea and peripheral numbness could fit with subconscious hyperventilation lowering blood C02 which affects blood calcium levels. Daytime jaw and neck stiffness particularly on waking can be a consequence of teeth clenching/grinding during sleep also as a result of endogenous stress.
One of the biggest barriers to dealing with physical stress symptoms is actually recognising them in the first place and I speak from personal experience and advising colleagues also suffering. Only you can evaluate your circumstances and see if this might be contributing to how you are feeling.
If nothing else you might get some improvement if you make a positive effort to relax and de-stress and find ways to avoid things which might be contributing to your current levels of stress.
With all best wishes and hoping you will find the answers and start to feel better soon.
TheRadman
david34720 TheRadman
Posted
Hey thank you for the well thought reply, u seem very knowledgable. I had to take a look at my exact symptoms over the past couple days n this is it . i have bulging temple on one side, tension headaches mainly on right side, ears get plugged like on plane on both sides which confused me, upper jaw is stiff n cracks, stiff around the eye area somewhat blurred vision on that side n its natural side i chew on..also have stuff neck that cracks alot, n have reddish ears for a couple days..i have had a mri n doppler on neck n showed nothing..the bulging temple i noticed tonight worries me..that is head symptoms, i have pins n needles on fingertips n numbness on palms, weakness on leg n arm left side comes n goes..i seen a muscularneurologist today n its nothing was result. Also alot of fatigue n cant walk farther than a few blocks without head tension starting. I take what everybody says with a grain of salt, let me know what u think
TheRadman david34720
Posted
Sounds like you have already had some pretty thorough imaging investigations. Assuming the reading radiologists were on the ball I don't think anything serious would not have been spotted. I am mainly an imaging specialist myself.
I think a lot of docs would struggle to put together all the symptoms into a single diagnosis. If you're most worried about GCA there is some good evidence about temporal artery US scan instead of a biopsy to exclude or confirm, could actually be better even. Doesn't seem to be in common use yet though.
The MRI scan you've already had would probably show whether you have any fluid accumulating in the middle ear cavities causing the plugging sensation.
Numbness and pins and needles could have a lot of causes. I would think about making sure you get enough vitamins good for nerve function particularly B vitamins in your diet just in case.
It still could all be a post viral problem.
david34720 TheRadman
Posted
Thanks for the reply, i didnt have plugged hears swollen temple when i did any imaging. From your experince has people with gcr had tension headaches when they try to do something active worsen like walk a few blocks or go gym or lift stuff? And i just had a noticable vien just formed today on the side that swollen it goes from about right from top head downward in front of temple just behind eye couple inches n then downward on an angle behind ear..is this a common trait u heard of for gca? I was emerg last night n doc mentioned vien but didnt have then..i am seeing fam doc tom, docs keep mentioning age as excuse i want to come prepared with stuff to refute their suggestions..also little concerned abput taking that med if i can get causse side effects..some people that got treated with the meds have some serious consquences
EileenH david34720
Posted
If it is a vein then it isn't GCA - giant cell arteritis, inflammation of arteries.
This report of GCA
https://www.hindawi.com/journals/crirh/2016/8239549/
mentions " the patient admitted to having more shortness of breath recently with minimal exertion (walking 2 blocks)" - but not increased headache. The diagnosis was made using MRI with GCA protocol. The patient was elderly and unwell - you might expect an increase of his problems on even slight exertion.
This
https://acpinternist.org/archives/2018/01/headaches-that-should-flag-further-attention.htm
and the original paper
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30871-6/pdf
show how broad a spectrum of causes can lead to headache that might be suspected to be GCA - and outlines ways of differentiating them. They concentrate on older adults however.
On the basis of this
https://www.healthline.com/health/exertional-headache#causes
it is fair to say that GCA could lead to exertional headache because the arteries in the brain could be narrowed due to inflammation anyway and exertion narrows them further.
david34720 EileenH
Posted
thank you for the detailed reply, that's very kind of you. do you by chance have gca? I haven't able to even go to the store now the secondary tension headaches and fatigue and everything else have got so back. well that's good to know the vein isn't from gca, it's right n the temple that's swollen out. I had an mri and 2 C done scans done over a month ago and ultrasound with the doppler on neck. any suggestions, i see fam doctor tomorrow, i almost have to give a sales speech everytime i go to get them to test for anything. my head just feel light and i have lost some sight in right eye where temple is swollen, they keep using my age as an excuse, and blood tests are normal. i m not getting better is problem and headaches started 2 month sago from only if i tried walk somewhere to all the time
EileenH david34720
Posted
My official diagnosis is PMR. I had some GCA symptoms and the consensus is that I have LVV, large vessel vasculitis, which borders on GCA (if you define GCA as cranial). Whatever, my symptoms were responsive to 15mg pred and remain in the PMR range. I have worked closely with the PMRGCA charities for 10 years.
IF you have lost some vision in one eye then you need an urgent assessment from an ophthalmologist - because there are multiple causes of that just as there are multiple causes of headache. Age has nothing to do with it.
Good luck with your doctor.
EileenH david34720
Posted
Even if it were PMR/GCA there are no real "more tests" they could or would do that would give a certain answer. They are clinical diagnoses based on signs and symptoms above all and you are not showing typical ones. If you have had an MRI that is clear then it reduces the likelihood of TIAs. Some 20% of patients with PMR/GCA have blood test results that are "in normal range", which doesn't always mean they are normal for them, and that is more common in young patients. But you can't FORCE anyone to test more.
Given the history I think TheRadmann has offered a very good summary of what any doctor will tell you and directions you could investigate to start with. Post viral problems can often present like more recognisable illnesses that Dr Google will throw up when you look for your symptoms and which will scare you to death. I'm not saying it 100% isn't an autoimmune disorder - everything is possible, including PMR or GCA despite your young age and gender which do make it a rare possibility but there have been documented cases.
As you are in Canada I know it is probably no use me suggesting a private specialist who might not make you feel as if they are laughing at you. I doubt they are - but you are feeling scared and, as a result, sensitive. The after effects of viral illness can take a long time to go away. I probably had what is now known as ME when I was in my late 20s. I was like you describe for a good 6 months after the initial illness improved and it took even longer to get back to full health. Yes, I now have PMR but it didn't manifest as such for another 30+ years.
Probably all you can do is be patient.
sandy08116 david34720
Posted
Hi David - I had bad temporal headaches, jaw claudication including clicking of the mandible (on one side) below the ear, tender scalp and visual disturbances. My CRP was 70+. Initially I was diagnosed with TIA which was quickly considered a misdiagnosis, was sent to the assessment and diagnostic unit of our local hospital, put through every machine in the building, had consultations and it took two days to resolve it was GCA and treatment started. A biopsy of a left temporal artery confirmed the diagnosis. The disorder was controlled after a few months and tapering of the corticosteroid (prednisone) took 18 months after which I was given the all-clear. I was lucky to be looked after by an excellent hospital rheumatologist and monitored by my GP. They were thrilled my body responded so well and so quickly. (I am 76)
Getting a positive diagnosis is imperative - if left, GCA can result in the loss of sight in one or both eyes.
All the best wishes
Sandy
(New Zealand)