Recently diagnosed, around a year ago but had symptoms for well over 3 years. Pretty much at the start of this journey therefore and main symptoms so far are lack of grip with small fingers in right hand (cannot close) plus a bit of forearm / back weakness and fatigue. Legs and rest of body still good currently but obviously a bit fearful of what the future holds.
Mood goes up n down if I’m honest and it’s taken me some time to join this community! Am bizarrely enjoying my return to the gym to keep going but struggle with gripping some of the bars, which also affects my ability to hold a golf club. Any advice for the latter? Playing is a 6 mile walk, if nothing else! All the golf grip aids seem to have been discontinued!
Anyway, Cheers everyone!
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JerryK598
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Hi quick response about the golf issue. My husband also has IBM (diagnosed January 2021 after 18 months with a misdiagnosis of motor neurone) and plays golf. The weakness in his left hand has been affecting his play but we did find a golf glove Taylor made TR3 grip trainer which we bought on Amazon. It has a section which wraps around your had once you have positioned it. Not sure if they do one for right hands but worth a google search. Our advice generally would be keep exercising to keep the healthy muscles in really good condition, a change from some previous views. If you go to myositis.org (american site) and look at exercise and physical therapy section , you will see links at the bottom of the page to papers by Dr. Helene Alexanderson and Sue Maillard. Click on the links to see pages of exercises you can print off, really useful. Also worth joining the Myositis Facebook page, a closed group but just apply to join, always useful to fet tips, hints and discuaaions geneerally etc
Thank you so much Tolkien for getting in touch. It appears that the TR3 glove, plus any similar models, have now been discontinued. Can’t find a right hand glove anywhere in the UK. There’s a left hand glove on eBay - no good for me. Would have been perfect I think. I’ll keep on searching though.
Thanks so much for the other advice too - much appreciated.
Just a quick thought. Are you under your local hospital or a specialist one? We found our local consultant did not have specialist knowledge and gave us a misdiagnosis in the first place. We asked for a referral.to get a second opinion which gave the correct diagnosis and my husband now gies to the Neurology Hospital in London and the consultant there is excellent.
One saving grace is that I am indeed under an eminent expert in Myositis, particularly IBM, based at the John Radcliffe in Oxford. My original local consult was to rule out hand injuries e.g. carpal tunnel, which soon led to tests for MND. Don’t need to tell you how that puts the willies up everyone involved. Once ruled out, I then got referred to the JR whose consultant diagnosed me pretty much on the spot, backed up by a later biopsy. I’ve also been assigned a physio, who hasn’t been able to help with the golf grip but has assisted elsewhere. All pretty scary but at least in good hands.
Hi JerryK598,I also have IBM, however the local physio service have repeatedly refused my requests for any physio on the basis that they have no one trained to deal with the condition I have. Is it a specially trained physio you have?
it looks like a bit of a postcode lottery, doesn’t it? When I was diagnosed “officially”, after tests/biopsy etc. my assigned physio was actually in the room with the eminent doctor. I have subsequently asked for advice on grip aids and general physio stuff and received useful responses, although nothing much more than the “use it or lose it” mantra.
Because I guess I’m still at the beginning of this journey, I don’t yet need actual physio sessions. If you’re in that boat, then it’s a shame you’re not getting the support you need. I’m near Oxford - where are you?
Hi JerryK598,Thank you so much for your reply. I am in north east England and the Royal Victoria Infirmary, Newcastle is where I had all of my scans etc.
Since being diagnosed it's a service called TIMS (Tyneside integrated musculo services) who offer physio - or not in my case. So yes I suppose it is a lottery.
The Neurologist who first looked at me repeatedly muttered the phrase 'statin burnout' but after lots of tests I got the IBM diagnosis. It does seem I am fitting into the general decline in muscle strength in the expected places.
I had a genetic test done for thyroid because of a long history of that problem in my family. It showed I have genetic flaws from both parents which stops me converting the thyroid hormone I produce into the chemically modified type needed by our cells. Despite this my Drs refuse to accept thyroid is dodgy because my blood shows I have normal levels. In addition I discovered that individuals with thyroid issues should not be given statins. For years before my diagnosis I was given statins (changed a couple of times when I complained of muscle aches in the legs).
I am still trying to convince the medical profession to give me a chance of recovery using immuno suppressants - so far no good but I intend to keep at it.
Hope you keep your strength up for as long as possible and fingers crossed for the medical breakthrough we all need.
Oh I do feel for you. The added stress of fighting for something in addition to the physical (and emotional) change and turmoil we have must be difficult.
My consultant was surprised I could stand up unaided from a chair, so said “see you in a year”. I’m pretty fit other than hand grip / right side so I took all this to mean that there’s a way to go on this journey. I read that Peter Frampton’s guitar playing fingers are as strong as ever in spite of wasting elsewhere. I’m therefore hoping my (currently) relatively strong legs hold out for a good while, until I need that physio and extra help.
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Hello to every sufferer fighting his/her way back to a kind of normality
New looking for advice pls 
Can my GP help with tests?
