Had a letter from my Rheumy yesterday, or at least a copy of the letter sent to the GP practice. Can anyone translate these parts, please?
"Myositis antibody screen shows positive Mi-2b with equivocal PL-7, ANA negative, CK normal in October 2021, bilateral MMT8 150/150"
Any insight into this would be of great help. Thanks.
take each separate diagnosis and google it. you will find an explanation for each.
Thank you. Why didn't I think of that?
you are welcome. I do it for the specialist garbage the specialists always write. They have to really as it is their language to explain clinically what you have. Unfortunately, it is gobbledegook to us laymen.
go to App Store and put translator on your phone .
Basically - they looked for evidence of myositis - as you can see, lots of similarities to PMR
versusarthritis.org/about-a....
You have a positive result for the antibody it creates, Mi-2, and that is characteristic of a particular form of dermatomyositis so there might be more tests to follow but it is a form that has a good prognosis. From reading, the PL-7 antibody appears to be typical of another form but that results is inconclusive, probably about the level that is neither one thing nor t'other.
CK is an enzyme that is raised if there is muscle damage -it was normal back in October 2021. MMT8 is a test they use to assess disease activity in patients with myositis - did you have a physical examination? It is basically asking you to lift a limb and they ask you to push or pull against them putting pressure on it.
Does that help?
That helps a lot, PMRpro, many thanks. No more tests have been mentioned so far. In fact I blubbed all over the GP on Thursday, (on the phone) and he said it would be discussed at their meeting on Monday. Nothing said yet. ..... Wondering whether to just wait, or whether to phone and give them a prod. My biggest problem is not being able to walk properly at all. From walking three miles a day, every day, 18 months ago, I now find it extremely tiring just to shuffle from my desk to the loo. What's that all about? (Alfie)
Weak muscles and they are looking at it properly - the most likely thing is more pred. I THINK it is a short-lived illness, unlike PMR
There was a very vague physical exam, with the Rheumy lifting my arms, and she asking me to push my thigh against her hand. What she doesn't know, though, is that although I could do these things easily, I would normally have had MUCH more strength than she perceived.
You'd be surprised what they feel!
Roses have needed dead-heading for ages, so I just decided to try doing it. Disaster!! The pain in the top of one buttock became so bad that I couldn't even put the things back in the shed. 😭😭😭😭
Have you got a rollator? Lets you sit to do things ...
Have just sent for a little motorised thingy. Should arrive by Saturday.
I've always been concerned about lifting such a thing into the boot of the car, as I live in quite a remote area. My choice.
A friend has a hoist to lift hers into the car. I've not seen it yet, as she doesn't live locally. I could put you in touch via a PM, as she's on this Forum.
Hi ChrisinNam
I am the friend of Rugger below. I bought a scooter as my rollator wasn't enough. I then had to buy a hoist to get it in and out of my car. The scooter comes to pieces, battery, seat and back wheels. All are heavy. The hoist is good but you need to practice and be careful not to raise it too high as it blows the fuse and that's another problem if your alone. It gets easier. I still have to take the battery off for maneuverability. It all goes in my Yaris easily. This has given me freedom to get out of the house but at a cost. You can get it with your PIP or the mobility element of your benefits if your lucky enough to get them. We went on holiday recently in Northumberland and had to buy a Roof Box for on top of the car as we couldn't get the luggage in 😀😀.
At the moment I'm receiving Attendance Allowance, but intend to phone CAB tomorrow to find out about either PIP or Mobility allowance.
If you haven't already been awarded PIP you must be under state pension age which according to your profile you aren't - is that right?
There is no longer Mobility Allowance - it has been replaced with DLA, Disability Living Allowance which is also only applicable to people under State Pension Age.
motability.co.uk/how-it-wor...
You might be better contacting ageuk for advice:
ageuk.org.uk/information-ad...
Thanks, PMRpro. Indeed, I'm well over State Pension age at 78 (although I'm actually only 25!!!). I'll contact Age UK tomorrow, then, and CAB.
Looks like PMR pro has said about PIP but if you get pension credit you might get some other allowance. CAB should be able to help. Benefits are a minefield.
if you’re in receipt of Attendance Allowance I’d be inclined to leave it at that….as PMRpro says it’s been replaced by DLA -and you will probably need to be re-assessed.
..you may be better served with what you’ve got now.
did you tell her that when you did it? I did. i knew that the muscle strength was atrophying
No, I didn't, Cycli. I didn't occur to me at the time. But I'm learning!
as do we all. seems endless doesn't it?
Haha. Nice to hear this. Those worst patients are suffering from part knowledge. Knowing what you don't know is the mark of an intelligent searcher for more. It's putting that knowledge to constructive use that makes progress.
Opinions please - do I need to worry?
Advice please
Update to 1st rheumy appt
An update in my quest …
