Wrong diagnosis

[Bro-]

After 5 months - thinking I had PMR/GCA. I was wondering why the prednisone wasn’t working and why I kept getting weaker and fatigued

and then more pain- My blood work was perfectly normal -MRIs normal I am now diagnosed with Trigeminal neuralgia- has this happened to anyone. ? Now all my bloodwork is offf. Cortisol is low - globulin levels

Makes me wonder if I was treated with too much prednisone for the wrong diagnose

[Bcol]

Hi Bro, sorry to hear you seem to have had the wrong diagnosis, hopefully they can now get you on the right track. I'm sure we have others with Trigeminal Neuralgia who will appear later. Take care.

[PMRpro Ambassador]

You will have been treated with the right dose for the diagnosis they made - but it was unnecessary in the context of their revised diagnosis. Five months was a long time to realise maybe it wasn't PMR/GCA - if pred didn't work that should have been a warning sign immediately.

[piglette]

I have read that 40% of people diagnosed with PMR do not have it. I have had two friends recently who actually had rheumatoid arthritis. One GP was saying that in over a third of patients he does not really have a diagnosis. I think if you go back they tend to check a bit more.

[PMRpro Ambassador in reply to piglette]

I think that nearly 20% of initial PMR diagnoses are revised within a relatively short time, usually to GCA or an inflammatory arthritis, both of which errors are forgiveable I think. Less forgiveable are when someone doesn't respond to pred and they don't take the hint.

[piglette in reply to PMRpro]

I suppose the people who really suffer are the more timid ones who do not go back and complain but think it is just them and the doctor is always right.

[PMRpro Ambassador in reply to piglette]

Oh yes

[sampete]

I really feel very sorry for you I had Trigeminal Neuralgia a few years ago in the left side of my head and face. It was very painful somedays just to talk or eat. After being on loads of painkillers for ages I had Microvascular decompression (MVD) operation. Although it left me with some numbess in the left side of me mouth and tongue it was the best thing I ever did. This was before I started with PMR

[Bro-]

It was all so new to me - I was just listening to the Drs. But I knew something else was wrong and begged to taper my prednisone I kept saying why be on it if it’s not working! They kept saying it must be some sort of inflammation. I have been on top of it seeing many specialists and second opinions . It was my eye dr who mentioned TN I searched a third neurologist who specializes in TN and finally was diagnosed . I’m tapering now and starting new meds which I’m not looking forward to! The prednisone really messed with my body - seeing an endocrinologist next week. This group is amazing and so supportive thank you! I will continue to stay on this page and be your cheerleader- best of luck to all of you as I start a different journey

[PMRpro Ambassador in reply to Bro-]

Not sure there is much an endocrinologist can do - it is all down to reducing the pred, fairly speedily down to 10mg and then slow down to allow adrenal function to return to normal,