New diagnosis DISH Disease

llandysul

Recently diagnosed with DISH disease. It has been 18 months since I first contacted GP about severe neck ache. It took 8 months to get an MRI scan appointment and then another 4 months to get a follow on CT Scan, plus another 8 weeks for the consultant to give me the diagnosis. The Consultant asked me to hold on while he googled DISH as he wasn't sure what it was…! I have now real loss of balance and mobility issues….pain is often quite muted but sometimes neck, and then because of my balance and walking may cause pain in hips and knees….There appears to be very little treatments available apart from physiotherapy and pain killers which I don't normally need….I can often manage to walk for 30 minutes or so each morning, but by lunchtime each day almost little balance and mobility and very fatigued.

Would love to hear of any useful suggestions on coping with this…..I am 72, usually used to be out and about 3 to 4 times per day with dog, not diabetic or overweight.

annabanana

hi @llandysul and first of all welcome to the online community, it’s great to have you here! I’m sorry to hear about the struggles you’ve had getting your diagnosis and how it’s been affecting your balance and mobility, it sounds incredibly frustrating, especially when you were used to being out and about with your dog so much before. it sounds like you’re already doing really well keeping up with your morning walks, however pacing yourself throughout the day and allowing time for rest breaks may help with the fatigue later on. I know you mentioned physiotherapy in your post, but have you met with a physio? They may be able to give you exercises that will help you keep moving and improve your balance - it may be worth asking your GP for a referral if you haven’t already.
i will attach a couple of links which you may find useful. hopefully some others here will share what’s worked for them too - you’re definitely not alone in feeling like this and I wish you the best of luck!

https://versusarthritis.org/about-arthritis/conditions/diffuse-idiopathic-skeletal-hyperostosis-dish/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/

https://versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

https://versusarthritis.org/about-arthritis/your-experiences/your-questions-answered/your-questions-on-pain-relief/

https://versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

https://versusarthritis.org/about-arthritis/conditions/neck-pain/

https://versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-neck/

I didn’t realise how many links I had saved! Hopefully you find a least a couple bits of useful information within these and please do let us know what does/doesn’t end up working for you.

llandysul

Thank you………..the current waiting list in Wales for NHS physio is apparently 4 to 5 months. I had requested asap the written diagnosis so that I could start with a private physio asap. Sorry to say the written diagnosis still took 6 weeks to arrive !!! but has now popped through the post. I will therefore be able to see a professional sports physio next week and begin to get some help…..I know him well, but he didn't want to start anything until he knew exactly what I was dealing with…..there had been an earlier suggestion that I had a hairline fracture, but this turned out on the CT scan to be a bone spur….hence the eventual diagnosis…

Thank you for your support and advice.

annabanana

@llandysul hopefully you find some relief from seeing your sports physio! I can understand how you feel, I have been waiting for a physio referral from NHS Scotland for, I believe around a year now? I also began seeing a sports physio for my rheumatoid arthritis, the difference has been night and day, I see her every 2 months and she’s a miracle worker - I greatly hope you get a similar experience and relief at your appointment!
Does he have any prior experience with DISH? It was tricky to find a physio with experience with RA but I am glad I did, as she has been much better than previous sports physiotherapists which I had sessions with.

llandysul

He has several patients with similar and the NHS Wales often send him patients…..his first sports clients were Formula One drivers and Welsh Rugby so he has had a lot of experience with neck injuries and issues ! It was just a shame it took quite so long to get to a diagnosis that could be worked on…thank you again !