I am reaching out to those with DISH

Posted by blondie46 @blondie46, Jun 30, 2023

I have recently been diagnosed with DISH and I see that an old discussion was active at one time, but I would like to talk to those who have been living with this disease for a few years and find out how you are doing. My diagnosis was just recently, but when my doctor emailed me about the results of my test for something else, he sent me the symptoms of DISH and it was an instant "OMG" so this is what I have been living with for 20 years and no one told me what it was. 20 years wondering what it was that caused my voice to instantly change, why I can not sing anymore, why my throat hurt, why I would wake up in the middle of the night because I could not swallow. I have tendons and ligaments that have turned to bone and osteoarthritis/ rheumatoid arthritis all through my body and now I find out about DIME, A whole new set of problems with my neck and spine. It is not a fun life, but a painful one.

How are any of you living with your diagnosis?

Interested in more discussions like this? Go to the Spine Health Support Group.

garypetersen | @garypetersen | Mar 7 12:32pm

In reply to @vrodriguez138 "Yeah Gabepatin which doesn’t help. It swells my ankles. Doctor took me off it. I live..." + (show)

I’ve found heat, hydration and exercise can mitigate the majority of my pain. Electric heating pads in bed and sitting.

dishpain | @dishpain | Mar 7 6:17pm

I don’t know for sure that dish is causing any issue, but I have to have a root canal and he said that the tooth pulp was filled with calcifications. So I don’t know if it comes from that or the fact that I’ve also had hyperparathyroidism and have had a parathyroid removed. Also, I see that people with higher uric acid levels, which is not unheard of for people with dish, at increased risk of calcifications in teeth. Just thought I’d ask.

dishpain | @dishpain | Mar 8 4:29am

In reply to @jumpin138 "Hi. My name is Jack and i have DISH. I'VE had dental problems but I don't..." + (show)

I thought I replied to this last night, but I guess I did not send it.
I have to have a root canal and I was sent to an endodontist. He explained that the pulpy area of my tooth was blocked by all these calcium deposits. So I also read that this could happen if you have several different conditions, and two of which I may have, I’ve already had one parathyroid removed because of parathyroid disease and that is an increased risk of doing this to a tooth. I also have elevated uric acid levels which can increase the calcifications. But elevated uric acid levels are also seen in dish patients.
So that’s what made me think about it, but I can’t find anything much published other than a support group that has mentioned that it can affect your teeth. Just thought I would ask.🙏

Jennifer, Volunteer Mentor | @jenniferhunter | Mar 10 11:39am

In reply to @dishpain "I don’t know for sure that dish is causing any issue, but I have to have..." + (show)

@dishpain I wanted to mention issues that can happen with parathyroid disease and bone density. My elderly mom has had osteoporosis for years and it became severe. She had a high blood calcium level because parathyroids were pulling calcium out of her bones and she did have 2 parathyroid glands removed. She has had osteoporosis related fractures. Have your doctors discussed bone density with you?
Jennifer

dishpain | @dishpain | Mar 10 1:02pm

In reply to @jenniferhunter "@dishpain I wanted to mention issues that can happen with parathyroid disease and bone density. My..." + (show)

Hi Jennifer. Thank you for commenting. I am watched very carefully because of all my conditions. I get bloodwork every three months and I do have routine bone density. So far since the one parathyroid was removed in 2019, my calcium has been under control and parathyroid hormone Has also been in normal range. I am also in healthcare and for myself, and try to make sure I watch out for things. I do so appreciate you pointing this out not only to me, but to everybody else who reads these posts. 🙏

9nm | @9nm | Mar 12 8:01pm

I was diagnosed with DISH in 2018. My initial symptoms were stiffness throughout my body . I gradually began losing some range of motion in my neck, and developed bouts of dysphagia. I was hospitalized, unable to swallow for 15 days ,and doctors decided I needed surgery, however when they came in to talk about the surgery, I was able to swallow, and was discharged the following morning. I have had stalled swallowing difficulties, lost range of motion in my neck, and a curve in my spine, and chronic low back pain . The only medical treatment I received was steroid injections, which were actually helpful in providing some pain relief. I have just dealt with the pain throughout the years. I am now 71 yo . Still drive, enjoy water aerobics, enjoy my family, and able to function well with the activities of daily living. This has been my journey !