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Ankylosing Spondylitis & Diffuse Idiopathic Skeletal Hyperostosis

I received my diagnosis of AS when I was 74 (now 76) after years of cervical and low back issues and a cervical fusion. Went to University of Iowa Rheumatology Center and after many tests, exams, and interviews the doctors came up with the diagnosis.

Living with AS and DISH

To make matters worse, they said I also have Diffuse Idiopathic Skeletal Hyperostosis (DISH) disease. My neck was entirely calcified, and my SI Joints as well. I had bulging disks in my lumbar spine. DISH creates abnormal bone growth, specifically, it causes spinal ligaments to harden and become bone as well as causing bone spurs elsewhere.

DISH has caused eating issues and getting food to go down as the bone growth from my cervical spine is putting pressure on my esophagus which also is causing a scratchy throat, causing frequent coughing spells. I have had several incidents of pulmonary embolisms over the years and doctors say surgery to help with these issues is not advisable as the risk would be too high.

Managing the pain since a young age

I take no drugs for the pain, other than an occasional Tramadol. The pain is not to bad if I stay in my recliner. I can’t get up and move around much as the pain becomes too much. To top it all off, I was diagnosed with heart disease last year, which doctors say could be related to AS.

My university doctors tell me I am in the later stages of the disease and likely have had AS since my 20’s or 30’s. I do not possess the gene marker that many have with AS. Guess that is my story.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dcran67
    3 months ago

    Does anyone know how to get treated without insurance? I moved to Florida 4yrs ago and now have no coverage. I’m 51 and was diagnosed at 17. I was treated in NJ, now nothing! I’m literally dying each day …physially and mentally. Any advice helps.

  • Lawrence "Rick" Phillips moderator
    3 months ago

    Dcran:

    I am not totally familiar with FL, but I do have a few ideas that might help.

    First, I wonder if you have looked into Medicaid. The program does operate in FL and it can often provide an excellent why to obtain coverage with limited income. I looked up FL Medicaid and how one applies. Here is a web site I found.

    https://www.myflfamilies.com/service-programs/access/medicaid.shtml

    One universal and relatively easy way to receive assistance is co-pay cards offered by pharmacy companies. In order to qualify you should visit your doctor and discuss which medication may be helpful. Then visit the web site of the pharmacy company who supplies the medication. These companies will often offer prescription copay cards that can offer valuable assistance with paying for medications. These programs are usually easy to apply for.

    Finally if either of these are not successful or do not provide enough assistance you should consider options for the Affordable Care Act (ACA). Here is a link to HealthCare.Gov where you can explore options. With limited income it is possible to have a near zero dollar health insurance options. Here is the web site:

    https://www.healthcare.gov/

    I wish you the very best. These programs can be complicated and confusing, but if you dig in, they can offer a successful way to navigate the healthcare system and obtain care.

    I wish you the very best !!

  • Lawrence "Rick" Phillips moderator
    3 months ago

    Dcran, I am so sorry to hear about this issue. It must be awful to not be treated.

    I am not an expert on FL options, programs and discounts for a person with no insurance. But I can offer some suggestions. The first and most basic is Medicaid. You have not said anything about your financial need but the first stop should be a local assistance office to determine your qualifications. If you qualify; this program can help immensely with finding assistance with your general health and welfare including AS. This link will better explain the program and where to apply in FL.

    https://eligibility.com/medicaid/florida-fl-medicaid-benefits

    Assuming you have done this and you do not qualify, I would suggest manufacturer copay cards. If your doctor prescribes a medication these co-pay cards can often help you get over the hump to afford medications. To apply for copay cards, first see a doctor and discuss the appropriate medication then check that prescribed medication web site. Many do offer co-pay assistance.

    Aside from that, the affordable health care act is available in FL. These rates are often income based and can make a big difference. Here the link for Healthcare.gov where you can look in on the various options in FL.

    These options are not perfect and they can be confusing. But the outcome of digging in can be valuable.

    I wish you the very best my friend.

  • Anthony Carrone moderator
    3 months ago

    Hi @dcran67, this is a great question and I want to help get you some feedback from the community. You might get some more eyes on your question if you post in our Q&A section. Let me know if you’d like some help posting – I’m happy to guide people to your question. Sending positive vibes your way, Anthony (Team Member)

  • Dawnfarrow
    3 months ago

    I was diagnosed with both of these diseases and 1 other. I had to have 3 surgeries so far due to scoliosis and my spinal cord being pinched and i would just fall down. At this time ive got 16 screws and 13 inches of plate from my chin to my sholder blades. I was diagnosed at 35. Im covered in arthritis aa well

  • PrincessLeiasYaya
    3 months ago

    Hello, thank you for your story. I was diagnosed with Spondylosis, degenerative disc disease 5 years ago
    The bone spur growth got so bad in my cervical C3-7 that it began to pinch the nerves in my neck left side and left shoulder. That caused extreme migraines at least 3 a week. Finally had cervical Laminotomy/Forinatomy Decompression surgery 7 months ago and best thing I ever did, haven’t had a migraine since. My prayers for you and all of us who suffer daily, God Bless you.

  • cpace63
    4 months ago

    I have disc degenative disease in my neck down so I have bulging disk and a pinched nerve, I wish I could say that I didn’t take any meds but I couldn’t stand it if I didn’t . Prayers and gentle hugs.

  • Lawrence "Rick" Phillips moderator
    5 months ago

    I actually learned so much by reading your post. Thank you so much for sharing. I hope you will continue to post.

  • Anthony Carrone moderator
    5 months ago

    Hi @mrowray – Thanks so much for sharing your story with the community. As Jed said, it’s such a great way to spread awareness and let others know they are not alone. Please know the community is always here for you and we hope you keep us updated on how you are doing. Sending my best, Anthony (Team Member)

  • Jed Finley moderator
    5 months ago

    Very informative and interesting story @mrowray

    Thank you so much for sharing it with the community. Stories like your’s are great for spreading awareness of how people live with AS and what other complications they might encounter.
    Jed Finley – Moderator

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