Author Topic: Just out of curiosity....  (Read 898 times)


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Just out of curiosity....
« on: March 08, 2019, 10:13:50 AM »
Hi Sjoggie-Mates,

I posted awhile back about my chronic illness saga & the search for answers. I know I have CVID & Sjogren's. I am trying to figure out whether I have a movement disorder (Essential Tremors or
Parkinson's) and also Ankylosing Spondylitis. I have some serious back issues and may soon be facing a serious spine surgery. As I always do, I joined yet another forum..this one is for folks with Degenerative Disc Disease and either facing or have had completed spinal surgeries.

Everyone in this forum has been diagnosed with DDD. One person asked the group, what other illnesses does everyone have. I was absolutely shocked to see the number of people who responded that they had Sjogren's, in addition to many other autoimmune problems. It really made me wonder if AS often accompanies SS (but perhaps is not diagnosed). I mean all of these years & horrible back pain...I assumed that my back pain is part of Sjogren's. It would have never occurred to me that back problems could be an autoimmune condition in and of itself. One of the things that is bothering me about that my Rheumy of many years has never even mentioned AS to me (and they are the type of docs who typically diagnose AS).

May I ask if others here have AS or live with serious back issues?

Take Care.

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;


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Re: Just out of curiosity....
« Reply #1 on: March 08, 2019, 10:36:22 AM »
SjoDry my first diagnosis, of a long list of many, was DDD. My issues started with intense pain in my neck which led me to have headaches and neck pain that landed me in the ER on morphine more than once. I was treated for DDD for some time then other issues slowly arose, e.g., dryness which led to an SJS diagnosis.

Eventually, things progressed to the point where I was tested for AS. While I have substantial issues up and down the length of my spine (many discs out of whack) my rheumy said it's all degenerative, not autoimmune (my neurologist says the same thing). While I don't have AS I eventually developed sero-negative RA and am being treated for it along with SjS and osteoarthritis.

So, is there a connection? I and another person I know who has SJS and similar spine issues say absolutely!
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.


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Re: Just out of curiosity....
« Reply #2 on: March 09, 2019, 04:01:20 PM »
I have some DDD diagnoses on my spine and it sort of comes and goes. Certain lifting, bending, etc aggravates it and I spend a lot of time on the heating pad or ice. Also endure a lot of pain because of it. I do not know if it is related to Sjogrens, but I have had it for years. I am a retired RN and did a ton of lifting in my day plus gardens big time, pulled weeds, raised flowers, bailed hay and sometimes cleaned my house. ::)

I also have the degenerative arthritis in my both thumbs which can be wicked plus a couple of other fingers and toes. I think a lot of it has to do with age and wear and tear. However, having Sjogrens probably adds to the propensity for the problem. Will be interesting to hear as time progresses what the cause is. Good luck. Irish

P.S. I had a compressed spinal cord at C4C5 and had a fusion in Nov of 2017. I have a cadaver disk and a titanium plate with 4 screws. Surgery went very well. Sort of a slow recovery cause it is hard to keep reminding yourself not to bend certain ways or lift, etc. I am finally  feeling like the majority of healing is done but must always be careful.

My surgeon reminded me before surgery that my surgery was done to prevent further nerve damage. After surgery they can't predict or promise how much better we will be. If I hadn't had mine done I would have been paralyzed or died. I still have aches and pains that I attribute to spinal cord damage but at least I am alive. Good luck with your surgery. Back surgery just much improved over years ago and the anesthesia is so much better also. Make sure your surgeon has done a lot of the type of surgery you are going to have. Practice makes perfect for them. Irish