DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Posted by ardithann @ardithann, Feb 10, 2018

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.

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Not everybody has the same outcome but mostly it is slow and progressive. I am 70 and have had this for 20 years. My spine is fused and I also have peripheral DISH in my hands, feet, knees, legs with lots of pain. It would probably be good to go see a specialist. Maybe if you get a good doc they can slow the progression.

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@ralph13

Not everybody has the same outcome but mostly it is slow and progressive. I am 70 and have had this for 20 years. My spine is fused and I also have peripheral DISH in my hands, feet, knees, legs with lots of pain. It would probably be good to go see a specialist. Maybe if you get a good doc they can slow the progression.

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I am seeing a specialist, she actually has the DISH diagnosis. She has been studying it for 10 years post medical school. Took a long time to get to the right doctor. I plan to do everything I can to slow the progression.

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Ty, that is great, it sounds like you are on the right track.

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Omg. I have also been recently diagnosed with dish. It’s been a long battle. Complained of pain for years, doctor after doctor. It got to the point I couldn’t take it anymore and filed for disability before I even got the diagnosis. I couldn’t work hardly. Every dr made light of my neck pain and told me no to X-rays. And also no to the dexa scam. Finally I begged and got both from an entirely new medical group. Well. Osteoporosis at a -2.7. I’m only 56! And the dish has been building for years but ignored. Mines in my neck and caused some mild kyphosis and difficulty swallowing. I fell terrible in 201 and suffered sooo much since. I guess it was the perfect storm to create this chronic pain. Also cervicogenic headaches from my neck and occipital neuralgia from that fall. And they topped it off with fibromyalgia too! Can’t do steroid injections cause of the osteoporosis. Meds have helped and I can sleep better now. But I still have so many questions as to how high is my fracture risk? Considering both bone diseases raise the risk. I have bone quality of an 80 yr old woman and the dish of an 80 yr old man. What do I have to look forward to scares me a lot. Scared on the disability claim because Iv been denied twice. Sold as much as I could to hold it together and counting on that or idk what I’ll do!!! No one seems to have heard of dish. A lot of drs don’t know if it. Iv real all I could find on it but also that it isn’t painful is totally wrong. It’s very painful everyday. If it isn’t rare why has hardly anyone heard of it?? And why did it take me five years and 4 drs before the X-ray and words were uttered??? Iv been reduced to poverty and hardly working over it!! It’s very real. And can be debilitating

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@gazbiker

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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I felt same way!!! Adjusting to a new normal. Praying for stable future. Got a lot better getting thru extremely bad episodes. It’s a bitter pill to swallow I know!!!!

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@rackerdan

<p>I have recently been diagnosed with DISH<br />Upon investigation , I have probably had it for much of my life.<br />I had radium treatments for a birthmark on my face as an infant.<br />The disease is progressing into my throat from my spine</p>

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Hi @rackerdan and welcome to Connect. That must be relieving to have a diagnosis but frightening to see it extend to your throat. What are you symptoms at this time?

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<p>I have recently been diagnosed with DISH<br />Upon investigation , I have probably had it for much of my life.<br />I had radium treatments for a birthmark on my face as an infant.<br />The disease is progressing into my throat from my spine</p>

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@ethanmcconkey

Hi @rackerdan and welcome to Connect. That must be relieving to have a diagnosis but frightening to see it extend to your throat. What are you symptoms at this time?

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Course voice and scratchy feeling

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Just wrote a long introductory note and my phone droppedb4 I could send
I’m 79 years old take Norco for pain and am relatively comfortable
Ask me questions and I’ll try to answer with this bloody phone

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