Woke up with really bad pain all over especially in the back of my head. Same feeling as the first time on front of the head. Tender to touch and really dull aching pain. Spoke to doc yesterday she’s not sure. She is so confused. Telling me that MRI shows nothing but something that is unspecified that she cant make out of. It told her of all the symptoms are all still there and no change only worse. She wanted me to go back to the ER. Which you all know I have a very bad experience with them. No more of the prednisone. Meaning I just finished the prednisone pack. SO NOW WHAT???? SO LOST
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Hali12
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I am really sorry that you haven’t found yourself in safe hands yet. What about a referral to a Rheumatologist? Surely more efficient than going to an over stretched A&E unless you are fairly convinced that GCA could be the culprit. I would perhaps change my GP, she doesn’t seem able to give you what you require.
You really need to see a Rheumatologist. This doc sounds out of her depth, especially if she has put you on 4mg for suspected GCA, which won’t show up on MRI either. So how many days back on Pred and what dose? Still 4mg? I had the back of head pain in the mornings for a few months before GCA hit properly. I just thought it was a bad pillow. Was the ER problem down to the individuals treating you or the policy? You could go again and hope there are different ones on duty. A number of people have struggled to find a competent doc but have got there in the end, you do have to keep trying, though it shouldn’t have to be like this with how you’re feeling too.
Sorry to repeat what been said in this post and others, but you need to go back to ER. Don’t know what happened last time, but this is serious! Hopefully you will see different personnel this time around, and get a better outcome.
Your own doctor seems completely out of her depth, so you need specialist advice.
Can you take someone with you when you go to ER? Or even if you decide to go back to your doctor? The presence of another person can concentrate their minds wonderfully and there should be less tendency for the doctor to dismiss your symptoms.
I agree with all above... you may be fed up with ER, but you are playing with fire!
It sounds like she (doctor) is way out depth... and if she recommended you go back to ER, it sounds like SHE KNOWS she's out of her depth and wants you to seek alternative help!
It's obvious you feel like crap and you have done for days now... Hali, you keep asking "so now what," and a lot of people are giving you good advice... and I am so sorry to sound insensitive, or come across as harsh, or mean, but personally I don't really understand the reluctance to going back to the ER?
Yes, you will wait a long time, and yes you may get a young, rookie who has "no clue," but if you go in there prepared with the factual information (ammunition!) you've been given on this forum over the past few days and you stand your ground, they will listen to you...
I'm concerned that you are now on zero pred, and still experiencing the "same feeling as the first time on front of the head. Tender to touch and really dull aching pain." This scares me.
Hali12 please go to ER. Go to a different hospital, but go to the ER.
If she thinks an MRI would necessarily show GCA - then she IS confused. She is totally out of her depth as Snazzy says and you need to see an expert. There are findings which are relevant to GCA in MRIs but the radiographer needs to be experienced and know what they are looking for and this paper
warns against delaying treatment for GCA while investigating what is found on the MRI.
Hi Huma
I can't believe the your doctor isn't being more proactive. Is there another in that practice you can see. The article provided by pmrpro should be printed off and given to your GP ASAP. It's the fact that she has prescribed 60mg (which helped or not?) Then reduced so drastically is scary. You are having a range of symptoms that should be investigated and if you can get to see a rheumatologist you might be able to move forward. But if you have any vision problems WHATSOEVER then you must go to the ER straightaway. If it is GCA then you can lose your sight pernenantly. To me a few harsh hours in ER is worth retaining my sight. Good luck.
Come on now, Hali12. Listen to the people on this forum and take the advice given. If you have read DorsetLady's story, that should fast-track you into action! We want to HELP you.
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