Have esr of 19 and crp .6. Biopsy negative , Doppler ultrasound negative. Started all this end of December. Keep getting told no gca . Still get some temple headache and now stiff sore fingers and sore palms of hands . Am I dealing with gca? Eyes and optic nerve checking out fine also. Have checked many times. Really don’t want to go to dr or hospital now. Any comments?
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Would say your bloods don’t prove anything - but that’s probably due to Pred you took - are you still on it?If so, what dose?
We do know that biopsy can give a false negative - but comparing all other tests run it does looking unlikely for GCA - not impossible if course.
If your temple problems are intermittent- can you attribute to anything else? Usually if it’s GCA thee don’t come and go / but it could by PMR as could the hand.
What other symptoms do you have which lead you to think it’s GCA?
Haven’t been on pred since dec 13. I have temple pain on and off. Have a virtual visit with a neurologist next week. Hope it’s worth it. Pain in hands and fingers is also stiffness and palms sore. Came on kind of quick. Thanks for the in put
Are your fingers swollen?
Not really. Just stiff and burning . Some fingers actually lock up. Palms burning sensation
Those really are not typical of PMR and need to be presented to a doctor without your determination it must be GCA. The temple pain is just one thing - it doesn't mean it is GCA. It could be a very rare presentation but by being very rare it also means it isn't very likely.
Hi liberty lane, what a nightmare period to have negative tests all the way round. Is the hand pain numbness or similar. The only thing I could see was a form of migraine that can cause headache and hand numbness rather than pain. But I am not a diagnostician so if the problems remain you need to at least see the Dr at some point.
You mention no signs or symptoms that would make any doctor think of GCA. Many things can cause hand pain and stiffness besides PMR and also temple pain.
I know, but I still worry because of the temple pain. I have a virtual dr appt next week. Thank you for the in put. It helps to hear opinions
Yes but it could well be something else - as PMRpro says doesn’t sound like GCA.
Have they been testing you for other things as well.
Based on your symptoms both where they are and the pattern of activity and the negative tests you have had so you are displaying characteristic symptoms of Fibromyalgia.
If you didn't have a very good response in terms of pain relief from Steroids this could also indicate Fibro or some other variety of Neuralgic Syndrome requiring Nerve Medications rather GCA and Steroids.
Severe Fibromyalgia usually involves an unholy trinity of other accompanying syndromes , Chronic Fatigue Syndrome , Chronic Pain Syndrome ( including Chronic Migraine ) , Hypersensitivity Syndrome.
The character of Neuralgic issues is that Pain can be intense , like GCA , but intermittent and triggered more rapidly by many different Enviromental and Stress triggers.
I assume they had ruled out other issues like Arthritis at the beginning of diagnosis with broad spectrum blood tests.
It can be very difficult and take time for Doctors to make a decision between issues which have similar symptoms especially if your case is complex but it does seem like the are doing everything they can to determine the cause for you and have done as much as they can before ruling out GCA for the current time.
This would not mean that if your symptoms returned as classic GCA and PMR in character that they would not look at this as a diagnosis and treat it immediately.
You phone conversation with the Neurologist will hopefully bring resolution.
Suggestion , write down your symptoms in a chart , how often they come and how long they last , and what things bring some relief. Give a Pain score to each.
Print off a simple line drawing of the human head and the human body.
With a bright coloured pen. Mark / Colour the exact area that the pain affects give a dot in a different colour at the points on the body that give the most intense pain. If your call is not a video call you can email these copies of these pain pictures to the Department and ask them to print them off to give to the Doctor to look at and discuss with you as you look at your own copies.
This will help them assess what is going on.
Consider the words you want to use to describe you pain or symptoms in each area and write them down so you can try and give them a real perspective of what you are experiencing . The words people use to describe their pain often give them clinical indicators to its cause not just the way you respond in a physical examination. So rather than say ," it's so bad , it never stops , it is unbearable" give a full picture for each pain area , tingling , burning , throbbing , hot , numb , intermittent , rapid , stabbing etc. Use the right describing word for your symptoms.
I am picturing the pain in my chest right now , I would say,
" It has grown slowly and gets worse with my palpitations on moving . It is a burning pain sensation and a tight pain , as though a wide band was squeezing me , and it makes it hard to take a deep breath., breathing in is more painful ."
Continuing about the pain I get regularly in my chest I would continue , " Sometimes it feels like someone is kneeling on my chest. The tight pain across the chest is intermittent but can last for a number of hours I get this for some time each day and it gets worse with activity . The worst pain , which comes in waves, is on my left side in two points , two inches from the armpit just under a rib and just below my collarbone near the shoulder, like someone is stabbing me with something sharp this can come on quickly and last upto an hour with an average pain score 7 but sometimes as high as a9 , at this level I can't move without it getting worse."
I have a Heart issue , so this is not a suprising description.
Try to stay calm and prepare and I hope you get more positive progress.
What a brilliant pattern to follow for any medical appt re any condition. ‘Be prepared’ and ‘be precise’ in short. Excellent advice.
Thanks for all the tips
GCA Temporal Biopsy result awaited 50mg Pred
Advice please. Could I have GCA?
2 weeks on pred before biopsy
Biopsy
Follow up after biopsy
