Rumi says no PMRA

[Rocketronzy]

As when I see him I have no bad symptoms.

I told him how I feel at 5 in the morning. At my worst. But he examined me. No blood tests no scan. Nowt els.

I should be pleased ,but not convinced.

How can I have all these symptoms..what could they be I'm baffled. 😲

Like doc just wants me off Pred. 🤔

Could it all be withdrawals symptoms.

I welcome all replies.

Anyone else with similar experiences.

I get all these bad symptoms but most go in An our or so. Apart from neck and head.

Could I be a Pred junky. 😱

All the best to you all

Hugs Ron.

[DorsetLady PMRGCAuk volunteer]

Hi Ron,

Not sure how long you've been diagnosed - your original post said "years" but how long, who diagnosed and what symptoms /tests did you have for that decision to be made?

Your Rheumy must be brilliant if can say you don't have PMR without any tests etc. But you obviously have something - did he hazard a guess at what? And any useful advice - other than get off the Pred?

[Rocketronzy in reply to DorsetLady]

Hi thanks.

He just says Writing to my doctor about getting me off pred.

I try very hard to keep myself fit.

So maybe that is why symptoms don't last. I don't know.

But at early morning I feel rough.

I must say I have never had the bad stiffness all day. Like lots 🤔

Seams stange to me how I can have almost all the Symptoms.

I feel it is just that I didn't have the at the time of his examination.

I just feel he doesn't believe me

Just wrote me off

Back to the docks.

We'll see how I go.

But if I have one more do worse

Than my worst do.

They won't like me when I'm angry. 😬

No he didn't hazard a guess

Didn't eaven see how you go 😳

Thanks ron.

[Chihuahua1]

Hi Ron

My rheumy told me the same and then proceeded to tell me I have fybromyalgia and like you I'm not convinced, although I do know that PMR was the correct diagnosis at the time as my readings were off the scale until I was put on pred. But it is in remission now so the symptoms are def something else. I'm thinking about paying to get some scans done to see if anything else shows. I'm due for some more blood tests so I shall just wait for those first.

Let us know how you get on. It might pay to speak to your GP about it.

[PMRpro Ambassador in reply to Chihuahua1]

How do you know you are in remission? A doctor can't tell - the only test is "is the patient symptom-free on zero pred?" Nothing else - there is not definitive test. And if the patient has a reappearance of symptoms and pred relieves it, whether their ESR and CRP are raised or not, the chances are it is PMR.

[Chihuahua1 in reply to PMRpro]

I have been off preds for a few months now. The symptoms I have are unlikely to be related to PMR as they are similar to peripheral neuropathy.... parasthesia in limbs and digits. It affects my ability to grip and hold things and walking is almost impossible some days

Sometimes I get a burning sensation in one or more of my extremities, as though I have stuck my hand in the flame of a candle and held it there. It wasn't relieved even when I upped the dose of pred for a week just to see. It made no difference.

[PMRpro Ambassador in reply to Chihuahua1]

Fair enough

[Rocketronzy in reply to Chihuahua1]

Wow nasty. Sorry

All the best

Hugs.

[Rocketronzy in reply to PMRpro]

Wish my doc thought lick that 😲

I suppose I will just have to bight the bullet

🙄

[Rocketronzy in reply to Chihuahua1]

O yes definitely speek to doc.

I am now thinking a lot of my strange pains is down to cramps in strange muscles.

Now just started tackling quinine

As I had a bout of v bad cramp in carves in bed😬

See how it goes.

All the best

Hugs.