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Diffuse Idiopathic Skeletal Hypertosis (Page 1)

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I am a male age 40 and have been diagnosed with dish. I understand that the only treatment is one of nsaid to lessen the symptoms. I wonder if anyone can advise me as to what to exspect in the future with this condition. I was told that I may have to have hip replacement in the future. I just need to talk with someone who has lived with this condition. I do not know how long I will be able to camp, canoe, and work. I have already had to give up my bike riding. I am just looking for a glimps into the future. Any help would be wonderful. Thanks in advance for what you may have to offer.
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First Helper BfromAz
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replied December 28th, 2007
Dish
Hi
My name is Geoff From Australia & I was diagnosed with Diffuse idiopathic skeletal hypertosis (DISH) about 3 years ago.
After diagnosis I was horrified of this disease. I am gradually coming to terms with this disease.
I do not know of anybody or my friends have not heard of anyone with this disease.
It is difficult to get information on the prognosis after 5 plus years.
As far as I know there is no treatment or medical drugs that can be taken as it isn't even a inflammatory disease, unlike other forms of arthritis.
I am finding that if you can keep active and try to do the things you were doing before diagnosis it will help a lot (I still play Tennis and walk 6 Km's a night)
I can become a little stiff in the mornings and some times there is a little pain, at the moment I certainly can't complain.
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replied December 28th, 2007
Dish
Sorry I forgot To Mention that I am 55 years Old & foud this article very comforting
DISH appears to be a phenomenon rather than a disease. Double-blind controlled evaluation (in which controls and patients were drawn from the same population) revealed no associated pathology. Arthritis, bursitis, and tendinitis appeared no more frequently in patients with DISH than in controls. Any back pain present was no different in character or duration than that noted in control subjects. A history of back injury was actually found to be twice as frequent in control subjects as it was in patients with DISH. Back flexibility was no more limited in patients with DISH than it was in controls. In fact, patients with DISH who had decreased lumbar spinal motion had a lower frequency of back pain, implying that DISH may be protective (Rothschild, 1985; Schlapbach et al, 1989).
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replied February 3rd, 2008
Hi Ron
I too was recently diagnosed with Dish. I am 46. I am currently also seeking information. In my case the disease is already pretty advanced. I have fusion going up most of my lower and mid spine. Range of movement in my neck is about 30% less than normal. My right leg has numbness and a bit of weakness due to compression on my spine. Pain for me has been mild to severe.

I have been to 2 doctors already and have been told there is not much that can be done. I have an appointment for a third in 2 weeks.

I have spent the week sifting through case studies and any information I could find on the subject. There is a ton of contradictory information on the web about DISH. Scamps post about DISH is very inaccurate and I suggest you do your own research. Put case studies in with your search about the disease and be prepared to do some reading.

There are complications associated with dish that you should be aware of. Do yourself a favor and start researching.

Good luck Ron
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replied February 3rd, 2008
Recently Diagnosed? Spent a week Sifting Throuh Case Studies?
BfromAz

I have spent years trying to come to terms with this disease.
What I posted to Ron was accurate. And as you suggest, do his own research.
Because you were diagnosed at such an early age and with it being so advanced, I would ask the doctor of the possibility of you having Ankalosing Spondilosos as well (Apperently this is not uncommon)
Anyway I hope things start to improve a little and you try not let it get you down to much.
I found the less you think about it and how worse off other people are with arthritis the more you can get on with your life.

All The Best
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replied February 3rd, 2008
DISH
Not trying to argue with you scamp... here are 2 links. mayo and hopkins. I have more case studies if you need those too... As for me... AS was the first thing that was ruled out. My issues right now are being caused by the Ankalosing that also occurs with DISH.

http://www.mayoclinic.com/health/diffuse-i diopathic-skeletal-hyperostosis/DS00740/DS ECTION=6

http://www.hopkins-arthritis.org/ask-the-e xpert/clinical-013002/forestier-s-disease- 514.html

All the best
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replied February 3rd, 2008
Dish
Hi Again

I have been having annual xrays ever since i was diagnosed.
They have found no more fusing other than my original 4 Vertabrae.
In other words
(nothing has changed)
My reaumatoligist told me that 70% of 80 year olds have some form of ankalosing and the disease is very very slow in progression.

Please take a look at this site as I think you are looking to much at the negatives

http://www.emedicine.com/orthoped/topic74. htm

Regards
Geoff
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replied March 1st, 2008
Followup
Had my third diagnosis last week. Went to see an orthopedic surgeon. Third diagnosis was Spinal Spondylosis. Surgeon stated that it was in every vertibrea in my spine. No surgical option. Pain management.

So... 3 Doctors. 3 Diagnosis. Think i'm a bit confused.

Bfromaz
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replied March 2nd, 2008
Dish
Amazing
3 Doctors all different opinions.
Unfortunatly the surgeon sounds like he got it right. He would have seen it before and all the xrays.
I hope you can control the pain in some way with the meds.
Thinking of you and all the best
Geoff
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replied January 20th, 2009
DISH
I was diagnosed at 40 with DISH, and as a nurse of 20 years had never heard of it before. I have looked everywhere for info on it, even in my medical journals with no success. I have severe pain 24/7 to the point where just everyday chores such as getting a meal for my kids causes excruciating pain. I have had to give up work because I can't lift anymore, I have been on NSAID and strong pain killers since Feb '06 with very little effect, and in the 3 years since my diagnosis, I have had a total of 3 months where I was pain free. This is only when the initial area affected had fused. Since then I have been in constant almost excrutiating agony. I don't have ankylosing spondylitis, that has been ruled out, but I have severe weakness, numbness, pins and needles in my right arm due to this disease and no-one can give me an explanation as to why. So whilst Scamp1 says he still plays tennis and walks 6km every day, there are those of us that find it extremely difficult to even move around and do regular household chore let alone anything else. You do what you can to get through each day as easily and as painfree as possible, because there is nothing anyone can do to help.
I hope for your sake you are not suffering the extreme pain that I am enduring, and that if you are you have family that are as supportive as mine are/have been.
Thinking of you
Vicki
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replied May 1st, 2009
Dish
I am a 38 female with no health insurance. I found out I had DISH after an auto accident and the radiology report came back with me having it. I have pain, stiffness from my neck all the way down to my lower spine and no longer can work because of it. My neck is the worst, can no longer turn my head to the right and very tight and stiff when turning to the left. My natural curve in my mid spince is now straight as an arrow. I can't reach up, down, or around anymore due the immobility. The DISH is all the way down to my lower spine and getting worse over the years. The ligaments in my upper back has become bone and every minute of every day is extremely painfull. I can't be on NSAIDS due to my bleeding ulcers and prescriptions strength Naproxen just doesn't take care of the pain and stiffness I feel everyday.

I have done my own research on this diesease on the internet because I too have found that a lot of doctors still don't believe or even heard of this condition let alone can treat for it. I keep looking for some article that gives details on this condition of how it is caused, the latest treatment and anyone trying to find a cure for it but so far the only thing I have figured out for sure is that this condition is still too new and still in the discovery stage. So for Scamp1 to still be active and playing tennis and walking everyday is wonderfull. I am happy for him but for those of us who have endured this excess bone that seems to fuse our spines, casts our liagaments, puts pressure on our spinal chord, causes tingling and numbness in our extremities and back as well as un-relenting pain and stiffness, allow our words to be heard and discovered so that someday soon, very soon there will be something that can help us before paraylis takes us over.
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replied June 15th, 2009
DISH or commonly known as Forestier Disease
I've had " dish ' for several years now and the pain management I've been given is not really what I wanted to hear or have to participate in. I have to live on Vicodins and Morphine sulfate tablets just to maintain a "pretend lifestyle" here in this society. From what I understand when it becomes so severe the only operation available is to go inside and scrape your spine for over time the disease will have your spine looking like a candle with an over flow of dripping wax. Not much good news here for people with this disease. For myself the hardest part of it is when bones spurs travel between my vertebrae and cause complete body shocks and excruciating pain. I find that the more I'm active and the less overweight I 'am the better I feel.I've looked into social security benefits and all I see that they really recognize is arthritis conditions and that if you go to National Rare Diseases you'll find it listed there. I've been told that it's cause is a floating gene that happens every 3rd or 4th generation with the individual. Soooooo when I can no longer walk or turn my head I'll just have to get me a hot rod wheel chair and keep on rolloing the best I can.
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User Profile
replied July 20th, 2009
DISH-associated Dysphagia
There are some good comments here. My 1st symptoms appeared in 2001 and although we are told that the disease 'progresses' slowly, it hasn't been slow enough for me. Also, barring one or two forums with useful comment such as above, there is little or no 'help' in coping with this beilitating condition. The worst aspect for me has been dysphagia - something that is only briefly mentioned, yet that can be life-threatening.
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replied October 13th, 2009
I am a 47 year old female and I was diagnosed with the disease at the age of 32. I was advised when I was originally diagnosed to keep active and use NSAIDs. I have tried to stay active but have had to stop certain things that I love to do. I can no longer run and biking, swimming and walking fast has gotten to be more difficult now. I have just been diagnosed with severe bilateral facet arthropathy and sleeping, sitting and standing cause me pain at all times. I can tolerate pain but it is getting more difficult. I have been researching this condition for a very long time and the information is little. I am looking into surgery but not sure what is really available. Wish you all better days and hope to see a change soon.
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replied October 31st, 2009
DISH
Hi, I was told I had DISH at the age of 28 and now I am 51. When I was first told the specialist told me it was at the rate of a 70 year old what ever that meant and I would be in a wheelchair by the time I was 40. Think again. I refuse to give into this disease although I have daily pain and now longer can sleep lying down. Walking is about 15 meters without an aid. I to have tried to find info on the net through different societies, universities and doctors but like everyone else it seems I useally have to tell them what dish is. I find some days the pain is that bad you can not explain so I then think of the people worse off than me, the ones who have never walked or run etc and try to think of a new interest I can do. I have recently taken up art and my teach is great he has adjusted all my brushes and tressells to accommodate my condition and while painting my pain goes. I also use the old saying USE IT OR LOOSE IT. I hope this may help someone and good luck to all my fell suffers.
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replied December 30th, 2009
Hey willnotgiveup , you are the first person that I know of that has DISH which is simular to my case. I have had this since 29 years old and had to stop working due to the severity of my pain. I was wondering if you have an enail address so I could talk to you. Kind Regards, Stan M. Chapin, SC
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replied January 14th, 2010
Hello All..I am 45 was diagnosed this past fall with DISH. My Dr. explained what was happening to me. I have had 2 Lumbar fusions and two cervical fusions. Now my Thoracic spine is getting worse. I refuse to let it get to me but like everyone, I have my days were I am in a lot of pain..I do go to the Heated Therapy Pool three days a week for an hour each time. This is the only time I get any relief. The heated pool is so nice to relax and get a bit of a work out.
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replied April 12th, 2010
Hi Geoff I also live in Australia Queensland Iam 55 year old women I have had dish for about 7 years it is getting so bad that I am have problems talking drinking and eating turning my neck to the right and looking up and down . I also have probems with my hand and face having pins and needles and am tired all the time and in pain 24/7 . I don''t no if it is the same for men but I have a build up of calcium on my neck it has now joined up all my discs and is about the size of a large lego block . I have been to heaps of Doctors who all say at first that they can make miracles but after looking at my scans they run liket the wind and say I can''t fix that you will just have to put up with it. The last doctor I saw was a bit better he is a neurologist in Brisbane and found that my dish is cutting off my arteries for a few moment when I turn my head and needs to be removed before I get to a stage where I can''t turn or eat or drink anymore seems like a small thing to ask to be able to do everyday things I wish I could find a doctor who would help me in some way I still try and do everything I can but I do pay for it later . I walk every day and do all the house work till my body tells me to stop . How are you getting on Geoff . Good luck keep intouch Carolyn
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replied April 12th, 2010
Hi Geoff I also live in Australia Queensland Iam 55 year old women I have had dish for about 7 years it is getting so bad that I am have problems talking drinking and eating turning my neck to the right and looking up and down . I also have probems with my hand and face having pins and needles and am tired all the time and in pain 24/7 . I don''t no if it is the same for men but I have a build up of calcium on my neck it has now joined up all my discs and is about the size of a large lego block . I have been to heaps of Doctors who all say at first that they can s miracles but after looking at my scans they run like the wind and say I can''t fix that you will just have to put up with it. The last doctor I saw was a bit better he is a neurologist in Brisbane and found that my dish is cutting off my arteries for a few moment when I turn my head and needs to be removed before I get to a stage where I can''t turn or eat or drink anymore seems like a small thing to ask to be able to do everyday things I wish I could find a doctor who would help me in some way I still try and do everything I can but I do pay for it later . I walk every day and do all the house work till my body tells me to stop . How are you getting on Geoff . Good luck keep intouch Carolyn
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replied April 12th, 2010
D.I.S.H
Hi Geoff I also live in Australia Queensland Iam 55 year old women I have had dish for about 7 years it is getting so bad that I am have problems talking drinking and eating turning my neck to the right and looking up and down . I also have probems with my hand and face having pins and needles and am tired all the time and in pain 24/7 . I don''t no if it is the same for men but I have a build up of calcium on my neck it has now joined up all my discs and is about the size of a large lego block . I have been to heaps of Doctors who all say at first that they can ... miracles but after looking at my scans they run liket the wind and say I can''t fix that you will just have to put up with it. The last doctor I saw was a bit better he is a neurologist in Brisbane and found that my dish is cutting off my arteries for a few moment when I turn my head and needs to be removed before I get to a stage where I can''t turn or eat or drink anymore seems like a small thing to ask to be able to do everyday things I wish I could find a doctor who would help me in some way I still try and do everything I can but I do pay for it later . I walk every day and do all the house work till my body tells me to stop . How are you getting on Geoff . Good luck keep intouch Carolyn
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