Mayo Clinic Connect
I would like to connect with someone with DISH disease. I saw one post about someone recently diagnosed with this, but can’t find it again.
Liked by tylamk1
Hello @ardithann, welcome to Connect. I had never heard of DISH disease so I did my own research and was able to find this information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/diffuse-idiopathic-skeletal-hyperostosis/symptoms-causes/syc-20371661. I see that you posted to a member that posted about DISH from 2012, https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-dish/. Is that the post you were wondering about?
While we wait for other members to join in, if you are comfortable, would you mind sharing a bit more about your experience with DISH?
Sure! The first time I heard about DISH was about 10 years ago when I was having severe shoulder pain. My family doctor sent me to an orthopedic doctor because he said I had some of the largest bone spurs he had ever seen. The orthopedic doctor was also somewhat puzzled, but said he faintly remembered hearing about something called DISH, and he thought I should see a rheumatologist. I had to travel to a town about 75 miles away to see the only rheumatologist he had heard about. When I saw him, he confirmed it was DISH because an x-ray of my spine showed the classic “candle dripping” look that created a solid thin line about an inch from my spine all the way down my back. He said there was nothing to be done for DISH except to try to stay active to avoid stiffening of the joints and back, and take pain medicine when necessary. He tried 10 or so pain meds without finding anything that worked very well. He said surgery to remove the bone spurs wasn’t a realistic option because they would simply grow back. Over the next 6 or 7 years the pain migrated through many of my joints – spurs in my ankle caused a tear in my achilles tendon, I had a total knee replacement in which the bone eventually grew over much of the replacement as best I recall from seeing an x-ray of the knee replacement years later, I had severe pain in my hip joints and my shoulder joints. The pain has somewhat waxed and waned, and people don’t understand why sometimes I can move freely while other times I am quite limited – nor do I understand it.
I have only met one other person who told me they were diagnosed with DISH, but their experience was very different from mine in that theirs affected mainly their spine, resulting in several back surgeries. My back has some spurs and random other problems, but my other joints have been my biggest problem.
I haven’t really researched DISH since my original diagnosis years ago. When i tell doctors I have DISH, they generally ignore it. I would be very interested in hearing from people with the same diagnosis about their experience with it and any new research that has been done. I have never heard of any association for people with DISH or support groups because apparently it isn’t very common and in fact it is just a form of osteoarthritis.
Liked by franknstein, doug2018
Hello, What would you like to know about? I am 54 and was just diagnosed with it last June. I have had it for many years-just never new what it was.
Liked by Justin McClanahan
I can add a little to my reply. I also have the large spurs on my spine. Many of my vertabraes have started fusing together. The fusions are fragile and will take quite some time to become sturdy.
Xrays show growth all over my body. I am becoming quite stiff and sore most of the time. Pain meds do not help alot so I just use advil to help sleep.
I have had both hips replaced because the joints were engulfed with arthritis.
My knees are are next. One in a month or so.
I am feeling it in my hands now too, mostly in my thumbs.
My feet have hurt for years. Achy bones and loss of motion.
Excercise is ok but too much can make things worse.
I have applied for and received Social Security Disability because of my limitations and the fact that the disease will only continue to progress.
I stumbled upon a discussion about DISH disease, but once I registered for this site and logged in, I couldn't find it anywhere. I was diagnosed 2 1/2 years ago, and I so desperately want to connect with others who have this dreaded disease. So many sights have misinformation, such as saying there is little pain or symptoms associated with DISH. That could not be further from the truth. I am in constant pain, and my mobility becomes more limited every month. Why isn't anyone researching this disease or trying to learn more about it? We need help! Not just pain meds (which I refuse to take because I want some quality of life!).
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Welcome to Connect, @wendysuej
I have moved your message to a recent discussion about DISH so that you can connect with @franknstein and @ardithann . There is also this discussion about DISH that may interest you.
– Does anyone have DISH and /or OPLL? https://connect.mayoclinic.org/discussion/does-anyone-have-dish-and-or-opll/
How do you manage your pain?
Hello, Heat, ice, rest, tylenol. These do not always work either. My largest problem area is my spine so a few times a week I just lay on my back on a hard surface to relieve the pain.
As far as managing the pain; meditation, distraction, exercise all will help.
Liked by wendysuej
I had surgery to fuse C4-C7 08/07/2018. After surgery the surgeon told me I have dish. He had to remove large spurs and still have others that make it hard to swallow and just this year I had to start using a cpap machine. I have spurs all through my back that cause near constant pain and even though I have spurs and severe stenosis in my thoracic spine the 2 surgeons I have talked to are not willing to operate on the thorasic.
January of this year I woke up nearly blind in my left eye and the condition is permanent its called NAAION its thought that I may a autoimmune disorder causing these things. Has anyone else heard of dish for instance being related to a autoimmune disorder, my bloodwork is good but I display many physical symtoms.
I tried to get into Mayo, Im 45 years old worried about my health, pain and especially my right eye going blind. Mayo declined my request for appt for some reason yesterday. Does anyone have some insight on getting seen at Mayo?
@doub2018 Yes, doug, I have heard of this. I have the spurs and stenosis and the eye problems–slightly different. And slightly enlarged organs, and a bunch of other stuff. My blood line has it in about half the people. And an ancestor from a while back had about the same thing, but she died before anyone knew what to do about it. She was about your age. We have it in the family, and We are pretty sure it is hereditary Gelsolin Amyloidosis. Oh yes, about half our kin use C-PAP. Are you sure you are not related to me? Read my story at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" A closely linked disorder is "Evans Syndrome". And You can read lots of good stuff on Alnylam.com, Mayoclinic, and the Univ of Helsinki Hospital site (do you have Finland heritage, or United Kingdom?) . This stuff hits any time, and anywhere on your body. The docs used to think it did not hit until 70-80. But now we know it can hit teens or younger. Alnylam has a program to send to docs who need help with the diagnosis.
Mayo does not take Medicaid. I would try to find out the reason you were rejected. I don't know which Mayo you called, but you can try one of the other ones. I have used the clinic in Rochester and the clinic in Jacksonville.
Liked by Teresa, Volunteer Mentor
I went to the Spine Clinic at Mayo Clinic Rochester,MN. This was the only department that knew what was wrong with me and diagnosed me with DISH. I also have eye problems but have always blamed it Type 2 Diabetes.
Do try and get an appointment in Rochester. Keep trying!
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
I'm 34 I was hit by a car at 17. I have a two level fusion in my lumbar spine. I was recently diagnosed with dish disease. The doctors had to look it up. It's painful to speak talk and even eat. The only thing that helps is injections and pain meds. They are decreasing my injections because of insurance and decreasing my meds because of the government. The pain gets so bad I'm tempted to end it all. The only reason I don't is because of my meds and injections. Now I'm concerned. They think I have an auto immune disease as well.
Steroid injections and pain meds. It took a while to find a balance
This is the largest Support Group for DISH sufferers in the world with over 2151 members the world over go to Face Book and type in
DISH SUPPORT and it will take you to the site.
There is also a Research Site for DISH which has extensive literature and studies on Face Book and a link is available on the Govt Web Site of Rare Diseases Info even though DISH is not considered a rare disease.
Being a new member here I was not allowed to post the link. I hope this helps!
I have recently been diagnosed with DISH. I am a 56 year old male. I have had coccyxdynia for 3 years and investigations highlighted a number of enthesisopathy on my pelvis. Further x rays showed lipping on the vertabrae. I'm still wondering whether this could be anklosing spondilitis? I now have lots of cracking in my neck and thoractic spine along with pain. I'm taking NSAIDS but they don't seem to be doing much? Feeling pretty low, 6 months ago i was a normal middle aged guy, now i feel i have been dealt a death sentence!
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