Worried I may have temporal artritis: Hi, I’m new... - PMRGCAuk

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Worried I may have temporal artritis

Emj31 profile image
16 Replies

Hi, I’m new here. I’ve been having headaches for about 6 months now and the doctor keeps telling me it’s anxiety but I really don’t think it is. I have pain on the left side of my head every day, some days worse than others. It’s always in the same spot just above my left ear. I’ve also started with double vision in both eyes and a blurred spot in just my left eye. I’ve been having sensations like the left side of my face is drooping and been having bad neck and shoulder pain. I’m only 31. Does this sound like TA?

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Emj31 profile image
Emj31
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16 Replies
SheffieldJane profile image
SheffieldJane

It is very unlikely Emj31. I think that you are too young for GCA by some distance. However, something is wrong that needs to be investigated after all this time. Could your doctor arrange a neurologist referral fo you? In the meantime, do you have a very well equipped Optician that you could go to and arrange a very thorough eye examination. If your symptoms change and you do think that you are having a stroke, then call for an Ambulance. I am sorry that you are experiencing such Anxiety. Good luck!

Emj31 profile image
Emj31 in reply to SheffieldJane

I’ve been to my opticians and all tests were fine and I’m being referred to an Ophthalmologist. I’m also being referred to a neurologist.

I forgot to mention that I have a sore spot on my forehead about left eye that hurts when touched and my scalp hurts on the top of my head when I brush my hair. I keep getting a painful pressure feeling in my left temple and sometimes I get it in my right one too. I’ve also found lately that I’m extremely tired.

I’m having bad anxiety because of all the symptoms as they are affecting my every day life.

SheffieldJane profile image
SheffieldJane in reply to Emj31

I can see that. You are doing all the right things. Health anxiety is really horrible. It would be incredibly unusual to have GCA but I can see how you ended up here. Mostly we are all over 50 and sometimes much older. Fingers crossed for an explanation.

SnazzyD profile image
SnazzyD

Hello. This must be very concerning for you, especially with the seeming lack of interest from the docs. None of us can say definitively whether it is GCA or not. Yes, you are very young for it but it isn’t unheard of and there are other types of vaculitis more commonly seen in your age group. It is indeed possible to get many of the symptoms from stress that can play a part and temporomandibular joint dysfunction can be really convincing. How many times have you been see and by what sort of doc?

Where in the world are you?

So they say it’s just (just?!) stress, but have they explained how this is causing your symptoms? I think at the very least you need to get your eyes checked today. Double vision and blurry spots should always be checked out without fail for a number of reasons, not just GCA. If it is persistent then a trip to A&E/ER is a good idea even if you annoy them. Do try to stay calm if you can. Others will reply here who have had lots of experience.

Emj31 profile image
Emj31 in reply to SnazzyD

Hi, I’m in the UK and I’ve been to a&e last week and the doctor there said it’s probably due to FND (functional neurological disorder) which I was diagnosed with 4 years ago. I’ve seen my optician a few weeks ago who couldn’t see anything untoward and I’m now waiting for an appointment to come through with an ophthalmologist. I am booked in for an MRI scan next Thursday.

I’m just so worried that they are shrugging it off as anxiety and it’s something sinister that won’t be treated in time.

PMRpro profile image
PMRproAmbassador in reply to Emj31

In my world FND doesn't equate to anxiety. It isn't perfect but wiki says

"A functional neurological disorder (FND) is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts.[1] The brain of a patient with functional neurological symptom disorder is structurally normal, but functions incorrectly.[2] According to consensus from the literature and from physicians and psychologists practicing in the field, functional symptoms are also called 'medically unexplained'. Historically, other terms have been used to describe these symptoms. Symptoms of functional neurological disorders are clinically recognisable, but are not categorically associated with a definable organic disease.[3] The intended contrast is with an organic brain syndrome, although the terms imply a level of certainty about causation that is often clinically unconfirmed."

i.e., for example, if there were a lesion of some sort to be seen in the brain it would account for the symptoms - there isn't anything they can identify, so instead of making a guess they use the word functional. I know the word functional causes a lot of confusion and distress to patients as a result - they think they are being labelled as "all in the head", maybe some doctors make it sound that way.

Of course, the symptoms may be the very early signs of something but there is nothing to be seen with current methods that is causing them. It is hard I know.

PMRpro profile image
PMRproAmbassador

It is unlikely you will find a doctor who will consider a diagnosis of GCA as you are very young, they are taught it only happens in older patients and is very rare in under 50s. However, very rare doesn't mean it doesn't happen and it does! The symptoms you describe could be said to be suspicious but there are other things that might cause them too.

Have you seen the optician since the double vision started? Did they examine the back of your eye? I have a patch of blurred vision in the middle of my left eye, it has been there for years and my (very good and very experienced) optician said it was a "floater" - mine does go away intermittently but it is there more than it isn't I think. For me it looks like a greasy fingerprint on my glasses - but it is nothing to worry about, just irritating.

Emj31 profile image
Emj31 in reply to PMRpro

Yes I have seen optician who said they can’t see anything untoward. I’m currently waiting for an appointment through to see an ophthalmologist.

Yes that’s exactly what mine is like, like a dirty finger print on my glasses but it’s still there when I take my glasses off. That makes me feel somewhat better but there’s still the problem with double vision and of course the pain in my head :(

PMRpro profile image
PMRproAmbassador in reply to Emj31

That is a good start - but I do know how you feel. Hope someone comes up with an answer.

Grants148 profile image
Grants148

I am sorry that you are having so much pain and discomfort,l think you do need to see a neurologist,if your doctor is not prepared to refer you l think you should see another doctor,l wish you a good outcome for this,please let us know how you get on.

Emj31 profile image
Emj31 in reply to Grants148

Thank you so much

jmjdz profile image
jmjdz

I would get another opinion from another doctor. Very important that you take charge of your own health.

Emj31 profile image
Emj31 in reply to jmjdz

I’ve seen a couple different doctors at my surgery and saw a doctor at a&e last week. As soon as they see “anxiety” on my notes they just say it’s that. Very frustrating and worrying.

sparrowthebrave profile image
sparrowthebrave

Please let us know what you find -- I'm having some similar symptoms to you, including the double vision...

Emj31 profile image
Emj31 in reply to sparrowthebrave

I had an MRI scan on my head on Thursday so I’m just waiting for the results of that and I’ve been referred to ophthalmology which I’m still waiting on an appointment for. The headaches have been getting worse and I’m so frustrated and anxious because of them. It’s so hard trying to work full time and feel like this everyday.

sparrowthebrave profile image
sparrowthebrave in reply to Emj31

Ug, I know exactly how you feel. I had an MRI back in August and nothing was found, but now I am to have an MRI of my head AGAIN as well as my eyes to see why I seemingly have developed this double vision/nerve palsy. The headaches part is just being written off as "tension headaches," but now I'm starting to get nervous. And yes... I too, have "anxiety" in my notes, and I feel like no one is taking me seriously, either. Have you been checked for cataracts? Let us know how the MRI turns out... I'm here for you and know how much it sucks.

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