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.
hello Wickety, i have also just been diagnosed last week with sporadic IBM in RVI after 2 years of waiting then testing, now been referred back to GP who wants to help but knows nothing other than me, RVI will see me again in year unless i drop off quickly, Very difficult to get out of chair and go up stairs but can walk of course with care, just turned 68 so checking to see how long i have before drastic deterioration, no one seems to know, just want to plan ahead.
Hi Myperu20,I'm sorry to hear of your diagnosis. It is now nearly 5 years since I got that news.. I had tried for several years to get someone to take me seriously for 4 years before that. I am no better placed at offering advice than any other patient. My experience tends to suggest if you can keep active it may help to keep some of the muscle but the deterioration is progressive. In the last year I have resorted to using a walking stick, and a frame. I am also going to have a stair lift installed . I changed to an automatic car. The Dr at the RVI who was my specialist consultant saw me once, then I got a yearly phone call to tell me what I already knew. That Dr went part time and decided since there was nothing to do for me - that took them 18 months to tell me in a letter and I now have to contact a GP if I needed to. The GPs don't really have any idea about IBM which is why I thought hospital provided that type of specialist treatment/ ongoing liaison. I also think the huge budget deficit the RVI had was a factor that could save them money. There are some clinical trials ongoing at present but the results are still some way off. They are a bit more like a small light at the end of a long tunnel.
I have also tried to access some physiotherapy, only to be told by TIMS (Tyneside muscolo skeletal services) that they have nothing to offer and no therapist trained in my condition!. I do think that the NHS is wonderful when it all works but my experience with this disease shows me that not all of it is excellent. There is not much else other than ask for an assessment by your councils adult care services to see what equipment they could provide you with - some may be free but I think it varies. Also consider the council run care call system - in case you fall at home and need help to get up.
If you haven't already done so apply for attendance allowance, I get the lowest rate but it does help towards some of the costs - I got low profile shower tray, toilet with increased seat height, grab handles.
If you drive apply for a blue badge the extra space is handy for getting into the car.
Try and stay positive if you can - I know that sounds difficult after such a diagnosis.
thanks Wickety, not good news with the TIMS I was relying on them for some assistance, been through the NHS past 4 years with a stroke then broken hip then cancer and chemo one train of thought was the statins could have instigated the Start, I am not on statins anymore,
My GP has started ball rolling with social services and give me letter to apply for Blue badge as know it takes months to get into system, i do not think i sm entitled to any allowances, i do know if you get an allowance it makes it more easy to get blue badge, I have started the exercise program, following U Tube, I am 68 and still work as it keeps my mind active but week on week off, advised to keep at this to keep my mind active until i feel its not possible. Anyway really appreciate hour speedy reply
As I understand it attendance allowance is not means tested, there is a free telephone number to ring so you could find out if it was worthwhile getting an application form. It's good that you have the work option open to you.
I am with you on the statin train of thought but this is dismissed by the medical profession - I had the simvastatin then atorvastatin when I complained about muscle problems. Then later onto rosuvostatin which I gave up on.
Neurology consultant in RVI took me straight off statins, i take a plant natural herb now, i find it strange they rushed me on them after stroke and now off them and nobody questioned it, will check out that attendance allowance, Every bit of advice helps
i applied for blue badge and got it thanks for advice, i have applied for attendance allowance and awaiting answer, can take up to 12 weeks, again thanks for that advice
Hi, I'm pleased you have got the badge issue all sorted. Yes it does take time for the allowance but once it is approved I believe it is backdated to the date of your original application ( if it was paper based but for some reason not online which they are starting to try out). Regards
Hi Myperu20, It's really good that the attendance allowance came through. It's not a huge sum but does go towards funding bits and pieces. It's also good news about the physiotherapy. I wish whoever did my paper based physio assessment had been professional enough to give me that chance.
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