PMR and brachial neuritis

[dmart7]

It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different course, typical of PTS. It is a problem with the nerves, and is thought to be another autoimmune condition. Apart from the autoimmune link, I'm wondering whether my PTS has any other relationship to my PMR. Are there any others out there who have experienced both conditions?

[Wouldlovetorun]

Hello dmart7!I'm sorry you have something else to manage as well as pmr. I've never heard of it and so googled it.

Sounds debilitating and difficult.

I can't offer any advice but am sending very best wishes to you. 🌼

x

[DorsetLady PMRGCAuk volunteer]

There was a post about a month ago - had you put PTS in full in your title it may have brought it up in related posts -

healthunlocked.com/pmrgcauk...

Unfortunately the author was a bit upset because there were a few light-hearted comments about the name in the thread and they didn't think we were taking it seriously - that was not the case.

There may be some useful information in there - and all the best

[PMRpro Ambassador]

Have you seen this?

ncbi.nlm.nih.gov/pmc/articl...

There is also a short article linking it as a differential diagnosis with GCA.

sciencedirect.com/science/a...

What are they offering as treatment?

[dmart7 in reply to PMRpro]

Many thanks for those. I've seen similar, if slightly less detailed. I'd seen mention of possible association with GCA, but your reference is more interesting. The implication isn't just, or so much, a differential diagnosis, but that one could progress to a form of GCA without knowing it!

As to treatment, I'm not even at first base - a proper diagnosis. It is less than two weeks since it started and it has taken a while to realise that it is not a PMR relapse (or even a heart problem!). I've only just realised that it must be PTS (down to down to the finest detail) and reported it via the dreaded e-consult. Given current problems, I don't suppose I'll get the electromyography but at least I'll get a referral to physio.

I'm still pondering the option of paying up for a consultant visit. But I haven't even worked out whether that should be a rheumy or someone else, given that PTS is more about nerve damage.

[PMRpro Ambassador in reply to dmart7]

I thought the self-reported case interesting - and the high dose dexamethasone seemed pretty effective.

[Pixix in reply to dmart7]

Can I just clarify, please? I have a reason! So you have diagnosed this from your symptoms, & it hasn’t yet been diagnosed by a Doctor? You are just telling them via e-consult? The reason? I’m in the middle of ‘diagnosis by email’,but not me diagnosing, the Dr is! I sent symptoms, he sends back diagnosis. No consultation by phone or F2F. But I think you’ve gone one step further? Very interesting!

[dmart7 in reply to Pixix]

Not quite sure what you are asking but...the PTS has not been diagnosed by a doctor. I used the e-consult to tell them the problem (symptoms) but also ventured a diagnosis. I am not sure that doing so is always welcome, but I did so because it is a rare condition and because my symptoms are so exactly correct. They have already come back and will refer me to physio, as I expected. This will help with the conseqent muscle weakness. In theory, the physio team could refer me to a neurologist or rheumatolgist for a diagnosis. Unfortunately, I doubt it because of resources and because the acute phase of my condition will have passed.

[Pixix in reply to dmart7]

As PMRPro has said I found it interesting that you haven’t had a diagnosis but are taking one to your Dr, as I have done the same. I think that, often, it’s something Dr’s don’t really appreciate! My Dr has now diagnosed 10 ‘diseases’ for me in 5 years, & he & I know each other quite well! I’m glad you got your referral to physio & hope they can help, or refer you to the relevant consultant.