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.

Liked by tylamk1, lilypaws

@rackerdan

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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I sent you a private message. If you did not get it please post tht here and I willredo it here.

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@rackerdan

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

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The radium treatments have caused many serious health problems later in life including cancerl. I believe I have DISH in addition to severe scoliosis crushing my lungs. It is also in my throat from my spine and affecting my swallowing. There are thousands of us who were radiated as infants. Terrible that there is no recourse. It was unmeasured cobalt.

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My first teeth came in without enamel
Subsequently, second teeth decayed rapidly
Had a full upper denture by age of 18

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@JustinMcClanahan

Hello @ardithann, welcome to Connect. I had never heard of DISH (diffuse idiopathic skeletal hyperostosis) 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?

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Im 48 and have had bilateral hip and knee replacements in the last 3 years. Waiting for a left shoulder replacement, I have internal and external Spurs, I was told at OSU that they can't help me. My back is inoperable. My ankles are shot, I'm in AFO on both feet. Is there a Dr that can offer me any hope at your clinic? I also have restrictive lung disease, severe kyphosis, advanced aggressive osteoarthritis with genetic propensity. I've had so many tests and procedures, I would be willing to try anything.

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Oh wow! I'm so happy I've found this. I was literally diagnosed on Christmas Eve – to add to other things like CFS/ME, Type 2 diabetes, Sleep Apnea, epilepsy, etc. My chiropractor suggested Xrays to check why my neck was so painful – I've been going to the chiropractor since 2007 and this is the first time anyone suggested Xrays. Anyway, I have DISH really badly in my neck and a bit in my pelvis / lumbar spine. I also have a curvature in my lumbar spine. I have trouble swallowing, reduced neck movement and in contast pain. I had a bone spur removed in my wrist 6 years ago when I had tendon surgery. It has grown back and is wrapping around the tendon. I need a new knee but that seems to be out now because of the DISH. I'm 44!!

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@nefertari

Oh wow! I'm so happy I've found this. I was literally diagnosed on Christmas Eve – to add to other things like CFS/ME, Type 2 diabetes, Sleep Apnea, epilepsy, etc. My chiropractor suggested Xrays to check why my neck was so painful – I've been going to the chiropractor since 2007 and this is the first time anyone suggested Xrays. Anyway, I have DISH really badly in my neck and a bit in my pelvis / lumbar spine. I also have a curvature in my lumbar spine. I have trouble swallowing, reduced neck movement and in contast pain. I had a bone spur removed in my wrist 6 years ago when I had tendon surgery. It has grown back and is wrapping around the tendon. I need a new knee but that seems to be out now because of the DISH. I'm 44!!

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Go to an Orthopedic doctor concerning your spine.. manipulation in the blind is dangerous.. then go to a neurologist as the spinal cord and all the nerves that stem from that control your body.. Big like Mayo,(there are 3 locations) Cleveland, Boston General, start with the best rated medical clinic .. you're too young to mess around with second rate guess work healthcare… Your state certainly has a Medical college.. that would be a start in your search for normal …

Liked by nefertari

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Hi,

I have been dealing with Dish Syndrome since 2014 and the doctors I see I really don't think the know what to do. I have seen a Rhumatologist and Spine/Pain Management. The last x-ray I had on my lumbar/hips the Rhumatologist stated axial spondyloarthritis and the Spine guys dish.

Can any tell me, can you have both Dish and Axial Spondyloarthritis or are they the same?

Also, I have asked for a second opinion letter and would like to see a specialist at the Mayo Clinic is the insurance company signs off. Can any point me to a great doctor?

Thanks

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Hi @pulaski I have been to Mayo and was referred by my doctor. I don't know if you have a choice of what doctor you get to see, but here are the ones I have seen. Pain Dr. Cara Prideaux, Surgeon Dr Nassr, Endocrinolgist Dr. Clarke and Neurology Dr. Fafid Mustafa. I'm sure they are all excellent. I am waiting to have surgery as soon as the governor in MN opens up elective surgery. Hope this helps.

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@pulaski

Hi,

I have been dealing with Dish Syndrome since 2014 and the doctors I see I really don't think the know what to do. I have seen a Rhumatologist and Spine/Pain Management. The last x-ray I had on my lumbar/hips the Rhumatologist stated axial spondyloarthritis and the Spine guys dish.

Can any tell me, can you have both Dish and Axial Spondyloarthritis or are they the same?

Also, I have asked for a second opinion letter and would like to see a specialist at the Mayo Clinic is the insurance company signs off. Can any point me to a great doctor?

Thanks

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Hi @pulaski, I'd like to add my welcome to Mayo Clinic Connect. @lilypaws has listed some great experts. Mayo Clinic's specialists work together as a team. This means no matter which doctor you see first, you benefit from the knowledge of the multidisciplinary team. Staff skilled in dozens of specialties work together to ensure quality care and successful recovery.

When you're ready to make an appointment, here is the contact information for Minnesota, Florida and Arizona: http://mayocl.in/1mtmR63
I hope you get the thumbs up from your insurance.

@lilypaws, I wish you the best with your upcoming surgery. Mayo Clinic is opening up with prudence and safety first. You can read more here: https://www.mayoclinic.org/covid-19
If you have an upcoming scheduled appointment and haven't been contacted by your provider’s scheduling office, please call to confirm or make any changes that you may need.

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@lilypaws

Hi @pulaski I have been to Mayo and was referred by my doctor. I don't know if you have a choice of what doctor you get to see, but here are the ones I have seen. Pain Dr. Cara Prideaux, Surgeon Dr Nassr, Endocrinolgist Dr. Clarke and Neurology Dr. Fafid Mustafa. I'm sure they are all excellent. I am waiting to have surgery as soon as the governor in MN opens up elective surgery. Hope this helps.

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HI @lillypaws, Good luck with the surgery. I hope all goes well and that you feel great after. I do have a question though, I was told there is no surgery for Dish. Are you just getting spurs taken care of? If you cant answer that is understandable.

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@colleenyoung

Hi @pulaski, I'd like to add my welcome to Mayo Clinic Connect. @lilypaws has listed some great experts. Mayo Clinic's specialists work together as a team. This means no matter which doctor you see first, you benefit from the knowledge of the multidisciplinary team. Staff skilled in dozens of specialties work together to ensure quality care and successful recovery.

When you're ready to make an appointment, here is the contact information for Minnesota, Florida and Arizona: http://mayocl.in/1mtmR63
I hope you get the thumbs up from your insurance.

@lilypaws, I wish you the best with your upcoming surgery. Mayo Clinic is opening up with prudence and safety first. You can read more here: https://www.mayoclinic.org/covid-19
If you have an upcoming scheduled appointment and haven't been contacted by your provider’s scheduling office, please call to confirm or make any changes that you may need.

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@collenyoung, thanks for reaching out. My referral is being sent to my insurance carrier so my fingers are crossed that they ok this. I really need to know what to expect and what can be done with Dish/Axial spondoloarthritis and if you can have both.

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You CAN have both. And they are both very different AND similar. AS is an autoimmune disease, DISH is not. No cure for either, but there are things that definitely help. After going through 4 Rheumatologists who knew little and offered nothing, I saw a physiatrist and that was a true God send! If you have spurs in your neck that cause coughing or swallowing issues, see a pulmonary doc before having surgery!! I don’t know where you are located but my pulmonary doc kept me from having unnecessary surgery (Lancaster PA) – he was a professor and taught about intubation so had a very good understanding of DISH. I would suggest reading about both diseases on Mayo Clinic’s site, but also reach out to other DISHies on the DISH Facebook forum and other sites that aren’t as clinical. While it’s not up and running yet (hopefully by June) check out dishdisease.support. I’m starting this website to help those with DISH and other mobility issues learn more, connect better with others, etc.

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@pulaski

HI @lillypaws, Good luck with the surgery. I hope all goes well and that you feel great after. I do have a question though, I was told there is no surgery for Dish. Are you just getting spurs taken care of? If you cant answer that is understandable.

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@pulaski I have degeneration of my back which has caused a scoliosis and my L- 4,5 and S-1 has stenosis. I am having a fusion. I don't know what they would do for you. I had my doctor refer me to Mayo. I got right in to a pain doctor and surgeon, but it has taken over a year to get this surgery. I had some other problems I had to deal with. Thank you for asking. Let me know how you do?

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Would like to know of any cures or treatments for Diffuse Idiopathic Skeletal Hyperostosis , have trouble with opioid medication but have to take it for pain.

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@dalehall

Would like to know of any cures or treatments for Diffuse Idiopathic Skeletal Hyperostosis , have trouble with opioid medication but have to take it for pain.

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hi @dalehall and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's. I did this so you can meet others members talking about DISH like @sueblue @rackerdan @ken82 @pulaski @pulaski @wendysuej @ralph13 and others. Click VIEW & REPLY to see their past posts.

Dale, what issues are you having with opioids? Have you tried other pain medications or therapies?

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