PMR and MS

[Linnetbird]

I was diagnosed with PMR in 2014 and put onto 15mg Prednisolone. I struggled to reduce the dose over the next 6 years never getting below 3.5. In 2020 my Rheumy Consultant sent me for a brain scan as “it’s the only bit of you we’ve never looked at!” Scan showed I was in the Secondary Progressive phase of Multiple Sclerosis and that the previous 6 years of PMR had probably been the Recurring/Relapsing stage of MS not PMR and it’s recurrent flares.

I wondered if anyone else has been diagnosed with both, and if given all appropriate tests at the start I may have escaped the nightmare of Pred reduction!!!

Thanks, Linnetbird

[PMRpro Ambassador]

I think there is at least one other MS plus PMR patient on here - but their name escapes me.

Did you not have anything more typically MS-like? I don't think I have ever come across it as a differential diagnosis for PMR.

[Linnetbird in reply to PMRpro]

Not that any medical person mentioned and it never occurred to me to check, as up to the point of initial total immobility in 2014 I had been playing tennis, hillwalking, doing aerobics/Pilates. My interest has been sparked recently as there are other people with both in my local PMRGCAUK Groups. About to check this out with them

Just for interest - cos this blew my mind- the Neurologist asked if I had a period of severe stress or been seriously ill 35 years ago, as they could date the scarring shown in my brain from the MRI scan!!!!

Thanks for your interest,

Linnetbird

[PMRpro Ambassador in reply to Linnetbird]

Good lord - and had you?

[Linnetbird in reply to PMRpro]

Well yes! When I thought about it I had never been seriously ill but sadly 1984- 1988 I had a baby with Cockayne’s disease, a terminal condition that means a child cannot metabolise their own protein so cannot grow. He was an absolute Sweetheart but died at age just 3+ years. Very full on, very stressful.

The latter scarring, 2008-2014 , my parents both got dementia and I had to deal with all the Social/Medical/Care stuff?

Thankfully, apart from Chronic fatigue, brain fog, muscle/joint flares, my Mental capacity is still OK ….. 🤞so far!!! But hey, who knows what’s going on up there 😳😂😂

[PMRpro Ambassador in reply to Linnetbird]

I have a friend/colleague through my husband who was diagnosed with MS years ago. He is still working - amazing really. And there have been so many advances in the last few years. One of my biggest translation projects was the market research they do during clinical trials when interferon was in development, late 80s, early 90s. I had a massive amount of background reading to do - so interesting but the patient interviews were heartbreaking as back then there just wasn't anything,

[Linnetbird in reply to PMRpro]

I am 73 and My MS Neurology Consultant at my last meeting in June said there was nothing to prescribe for people over 65 as experience and research showed that whatever is prescribed for younger folk with MS just has bad side effects for older people.

I keep in touch with the MS Society and try to keep up with developments. Thank you for your interest and replies.

[Smithie49 in reply to Linnetbird]

Hi Linnetbird. What a heartbreaking story. My heart goes out to you. But to think the two tragedies left physical scars on your brain, that are detectable by a scan just staggers me. Amazing. I wish you everything good from here on x

[Linnetbird in reply to Smithie49]

🤗 thank you

[SheffieldJane]

Thank you for sharing your story. I am sorry that this has happened to you. How logical it seems that the heartbreaking loss of your sweetheart son should leave such a scar.

My grandmother had MS and I have wondered over the 8 years that I have had PMR then GCA whether it could be what she had, especially as I still feel pretty bad this far on. X

[5lupins]

I had a brain scan recently to check for other problems. No ms but chronic white matter Ischemic. Ms is also a white matter problem and my daughter in law was diagnosed with it earlier this year. She is 52 and is on a life time medication.

I hope you keep well and remain under the care of a good neurologist. Take care. 🌸

[Linnetbird in reply to 5lupins]

👍thank you

[krillemy]

All the best to you. May I ask: if you do not have or had PMR, how do the doctors then explain the pain?

I was also examined for MS in the beginning (5 years ago), but was told that MS did not cause pain in itself.

I have often wanted to ask for a second scan, as my MS like symptoms are more disabelitating than the PMR pain.

[Linnetbird in reply to krillemy]

Hi Krillemy, that’s interesting. I have not been told that MS does not cause pain. If not then, yes the pain of the early years would most likely have been PMR. The Neurologist’s comments had made me wonder if I had never needed Pred and the horrors of reducing!!!! I have my next appointment with my Rheumy next month so will ask these questions . Thank you

[PMRpro Ambassador in reply to krillemy]

mssociety.org.uk/about-ms/s....

Not sure how your doctors supports that claim - most of the people I know have pain to some degree and it is due to them having MS. If it is nerve pain, it is due to the effect MS has on the nerves.

[Rugger]

Hello Linnetbird, I am so sorry to hear about your son and your parents - no wonder your body has shown signs of these stressors by developing MS and ?PMR. I do hope that your condition progresses only as slowly as can be.

I believe my PMR was triggered by years of coping with my ageing parents' needs.

Perhaps we'll meet at a PMRGCAuk support group meet-up?

Thinking of you. 🌻

[Linnetbird in reply to Rugger]

Thanks Be lovely to meet up. All best. L

[Jantayl]

I was diagnosed with MS 25 years ago- had no other symptoms other than a ‘virus’ at the time and a slight double vision in one eye. Had both MRI and lumber puncture to confirm. Had no real symptoms and continued to run and climb ‘Munro’s’. 20 years later I was diagnosed with PMR and GCA with all the classic symptoms for both and have been taking steroids etc since. There has been no indication to me that there is any connection! At present I have managed to taper to 4mg pred and I shall keep trying to reduce as much as I can. Hope this helps some understanding.