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And The Diagnosis Is??? #282583
02/06/19 07:55 PM
02/06/19 07:55 PM
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SjoDry Offline OP
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SjoDry  Offline OP
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Hi All.

I have not been diagnosed with AS (yet). I have been diagnosed with CVID and Sjogren's Syndrome. I have been having lots of symptoms that look like a movement disorder (Parkinson's or Essential Tremors)..severe back pain, resting head tremor; internal tremors;strange stiff gait, sleep difficulty, etc. I made an appointment to see a Movement Disorder Specialist (and can't get in until May). In the meantime, I am having excruciating pain in my back, it feels like I am being stabbed in the a.m. in my left rib. Since I just helped my mom move from Florida to my home state of PA., I thought maybe I herniated a disc or something because of the severe pain.

This prompted me to go have a double MRI (Thoracic & Lumbar). My entire back is involved. I did not do a cervical MRI, but have had 2 previous spine surgeries in the C4-5/5-6 area. My report states that there is slight kyphosis in the thoracic region.There is multilevel disc bulge with a herniation at T3-T4. It goes on giving the details of every disc issue down my whole back. It does say that there appears to be ankylosis involving the lower cervical spine.

My pcp called and wants me to see a neurosurgeon. I am asking myself...do I really have a movement disorder or is my strange gait coming from all of my back issues? I spent many years on opiates and went to a pain clinic. I decided to take myself off of the opiates a couple of years ago. I finally just broke down a couple of weeks ago & started on medical marijuana. It helps the pain far more than the opiates did. Also, I am having the absolute best night(s) sleep that I have had in years.

My Q: Is one considered to have AS if there is any fusion, or does it have to be very substantial amount of fusion throughout the back? I do think that my gait is being greatly affected by something. I don't see the neurosurgeon until April 3rd.

Thoughts anyone?

Thanks much.
SjoDry

Re: And The Diagnosis Is??? [Re: SjoDry] #282584
02/06/19 11:36 PM
02/06/19 11:36 PM
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SouthernMoss Online
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Fusion is not a criteria for an AS diagnosis. Many people with AS never have any fusion.

Have you been evaluated by a rheumatologist?


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: And The Diagnosis Is??? [Re: SjoDry] #282585
02/07/19 01:07 PM
02/07/19 01:07 PM
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SjoDry Offline OP
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SjoDry  Offline OP
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I have had a Rheumatologist and Immunologist for years. I didn't really take my back pain issues to the Rheumy. He is aware of my situation and is following. I might add that he just told me he is leaving for a different state.

I guess I will just wait to see what the neurosurgeon & Movement Disorder Specialist say.

Chronic illness sucks.

SjoDry


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