Hiya guys hope your all well as can be . I’m worried bout my arms . Since yesterday they have been aching and I can’t lift them above my head . They so weak . I know it’s part of my relapse . Last week my neuro asked to see me to tell me my MRI results were pretty bad this time . Got significant legions on my spine . ( three ) All ready have two on my brain . Neuro said he didn’t know how I affected yet . Got start injections this week . Anyone had this ? Arms very bad and worrying me xxx Any help or advice be great xxxx
I’ve had an initial bout ofTranseverse Myelitis diagnosed, followed by another episode 2 months ago and am waiting to get results of new MRI…and both instances involved my arms.
Couldnt wash my hair let alone dry it…at points couldnt use a mug or cup had to use a spouted sports bottle held with both hands. Eating was even difficult, couldnt lift the kettle…IT WAS AWFUL!!!
At that point I was on 900mg gabapentin 3 times a day plus some oral morphine and 20mg Amitryptyline at night as the pain in my arms was quite excruciating.
However I’m pleased to say that I am well on the road to recovery 2 months after the last instance, definitely recovered quicker the second time as I have been receiving physio and that has been way more useful than I would have thought.
I still get quite severe action tremor which is much worse when I’m tired or stressed…but it is definitely improving.
All the best Minder it really is a total b****r … totally recommend physio as soon as you’re on the mend buddy
Gillian xxx
Hiya Minder,
Just wanted to say I do hope your relapse wont last very long, cant be easy for you. Just to let you know Im sending you good vibes that your soon back to normal, this ms milarke is not good is it.
take care and keep us informed as to how you are.
bren
x
Hiya both Thanks very much for your posts . I’m back on my excercise as soon as I can . I was feeling great when I was doing it . Ms is a bitch . Hope u both are ok Thanks it means a lot xxxx I keep you informed
Hi, I have legions C2 -C4. Legs affected and sometimes get weak arms - have a tin of beans
on the kitchen table to do exercises with as I read the paper. Pain and weakness went away as quick
as it came. Hope yours clears up soon.
Jen x
Hi What does the numbers mean on MRI result ? They never tell me that . Hope you ok Thanks for your info Hope I recover like you xxxx
Sorry to hear about your arms. I was first diagnosed with TM with a whopper lesion C2-3 which rendered one side of my body useless. I could not lift the arm at all & hand would not work. This resolved within a few weeks but left residual weakness etc. I saw a neurophysio as seemed to move the arm completely differently, causing shoulder issues. Within a couple of months was back to near normal. Can you get a referral? The bummer is that like you I have a few spinal lesions now, am due to start Rebif in a couple of weeks & my other arm is now affected from another lesion. Not useless, but so weak that I can’t pick up mugs etc. I am also trying to get over a relapse so just try to remain positive this will resolve. My dad found lots of kitchen gadgets which have made opening/handling stuff easier & I have developed my own strange way of getting tops/jumpers on/off! I hope this resolves for you soon.
Re. Your question on numbers. C stands for cervical spine (top bit), T for thoracic (mid) and L for lumbar (the bottom bit). If you google spine you will get good pictures.
Sorry, we old timers know all the shorthand and sometimes forget newbies dont.
thanks zigzag.
Minder - don’t forget, if you don’t understand anything then ask. (GP’s neuros, us) Before diagnosis a neurologist said they would
send me for a lumber puncture - thought it was something to do with my lungs until I googled it.
Jen xx
Thanks guys your help is much appreciated . Been dx two years now . Still getting used to terms of it . I will get in google now bout MRI info and ask my ms nurse to refer me to other people who can help ( physio ) just read your posts and forgot names of things all ready lol If we don’t laugh we cry xxxxx
Minder make sure you get a neuro physiotherapist x
Thanks Gillian I will call bout that tomorrow . Thanks xxxx