Should I worry?

[Trish21]

So yesterday I received a copy of the letter sent to my gp from recent rheumatologist appointment which mentioned results of MRI scan showing chronic small vessel disease. No one mentioned this to me at the time of MRI, should I be worried?

[HeronNS]

I don't think you should be worried as such but you should ask for an explanation and whether there are any treatments more appropriate. I did quick google research as I don't know a single % what PMRpro does, and indications are that as many as 1 in 8 patients diagnosed with PMR may actually have small vessel vasculitis. The good thing seems to be that pred treatment for PMR helps this other condition even if one was initially misdiagnosed.

I have to say I thought PMR was an inflammation of the small blood vessels but I guess what is being described in the literature is more specific.

[piglette]

I am always horrified by the things they mention on my xrays and scans. Nobody ever talks about them and I have never actually asked. I assume nothing too drastic has shown up.

[PMRpro Ambassador in reply to piglette]

But look at Gary's mum's post...

[piglette in reply to PMRpro]

I know. Perhaps I am too trusting or I just don’t want to know.

[Daisychain12]

I had an experience too. Rheumy casually referred to little white dots on mri. “ damage”. Apparently. He said it was nothing. But it must be something??

[SheffieldJane]

I really think that your doctors owe you the courtesy of a discussion about this finding and it’s implications. Don’t be palmed off just because it’s common in our age group.

[Boozsa]

Interesting. I am still undiagnosed but I had an MRI that showed early age small vessel disease. My doctors blew it off and have never really said if it means anything or not. Do you have PMR or GCA?

[Trish21 in reply to Boozsa]

I'm being treated as pmr but blood tests were fine, responded well to steroids so really not sure now what to do

[piglette in reply to Trish21]

About 20% of people do not have raised inflammation markers, perhaps you are one of those. I suppose it does make it difficult for diagnosis, but if the pred helps and you had PMR /symptoms it probably is PMR.

[PMRpro Ambassador in reply to Boozsa]

There is imaging evidence of small vessel vasculitis and your doctors are ignoring it?

hopkinsvasculitis.org/vascu...

[Boozsa in reply to PMRpro]

Yes a 2016 MRI showed a T1 image flare indicating and I quote “ early age related small vessel disease” said it was nothing to worry about and never related it to anything I have been going through.

[PMRpro Ambassador in reply to Boozsa]

At the time maybe not - but that is a long time ago in vasculitis terms.

[Boozsa in reply to PMRpro]

I agree and I’ve only gotten worse. I just read your story on my other post and it is so similar to mine. Almost identical except for my age and we don’t even really have that big a difference there so I’m going to keep trying to find things to present to my GP in the hopes of getting on prednisone again and do some research to look into a PMR/GCA specialist or clinic. I may be able to go to Canada and pay since I’m so close but I will have to look into it. The new eye pain, swelling and drooping has me concerned.

[PMRpro Ambassador in reply to Boozsa]

You COULD try writing to the Mayo at Rochester or Johns Hopkins telling your story and mentioning the MRI and asking for advice.

[trish29]

Good Morning Trish 21, l am Trish29. I wish you well on your MRl results and think you should be told more . Can l ask what a MRI scan involves as l see my Rheumatologist

DR Rod Hughes this coming Weds 16th Jan and he is hopefully discussing the MRl scan with me..l sent him a fairly long e/mail yesterday as my GP has asked for this scan.

I put him In the picture how things have changed for me since l last saw him in August.

He answered my e/mail straight ( just Amazing ) l haven't got much Mobility at the moment so l hope l can have this scan. Dr Hughes has said yes in my e/mail. Best wishes to you and l hope you get more answers.. trish 29

[Trish21 in reply to trish29]

Hi Trish 29 lovely to hear from you. I had an MRI scan to rule out the possibility of a TIA. Basically I lay on the bed with my head firmly cushioned so it could not move. The bed then slowly slid into the scanner and lots of banging and tapping noises start. I was in there for maybe half an hour. Not at all painful, a bit noisy and if you suffer with claustrophobia you may struggle but the member of staff with me kept asking me if I was ok. Oh she did give me ear plugs to help with the noise. All in all not as scary as the thought of it. Hope this helps.

[trish29 in reply to Trish21]

Hello Trish21. Thank you for your reply and info. That sounds good to me as long as l can get up on the bed . If I'm lucky enough to get this scan l will have to switch off with some Mindfulness. Life's a bit hard at the moment as my other half has just come out of Hospital after having a Bladder operation and is my main carer . We have a little bit of help coming in but need more and l was assessed at home this Monday for more care at home .There will be a meeting tomorrow and l will hopefully get some answers.

I am also waiting for an occupational therapy team to come in and make some adoptions around the house for me. It's all happening and the PMR is picking up on it.

Best wishes trish29

[Jayge]

I looked up chronic vessel disease and found Mayo Clinic. It is easy to understand the explanation.

[Trish21 in reply to Jayge]

Many thanks