I went to see my Rheum yesterday for the results of my MRI on my back.
I saw her on 12th April and reported increasing back and hip problems. Also muscle twitches in my left leg and lower right abdo. She made no comment and sent me for the MRI. Following that I was diagnosed by my GP with bursitis in my left hip and given a steroid injection, which worked wonders for me. That was actually about 8 weeks now and I can feel that the effects of the steroid jab are wearing off. Pain and burning are getting worse. Anyway, I then had the worst headache of my life with the increasingly painful myalgias around my head and ears. Diarrhoea for 5 days straight.
My Dermy listened and put me on a 5 week steroid course (20mg for 2 weeks, then 15mg for 1 week, 10mg and 5mg) to see if the symptoms responded positively, so that he could finally justify going down the immune suppressant route. I guess lupus responds to steroids and so rathe than sending me for long and expensive tests to prove lupus or not as is sometimes the case, this would tell us if I responded well. And yes, the steroids have been amazing. No aches and pains. No headaches, No diarrhoea. No fatigue. Given me a new lease of life. Loads of energy and hope.
So I went to see Rheumy, fully prepared with my notes etc. Ready to tell her the Dermy was sorting me out and bite my tongue as I know I might need her in future, even though I think she is useless. She comes out with the MRI has found something that we weren't expecting. You have a syrinx cyst on your spinal cord. It's a fluid filled cyst. I am referring you to a neurosurgeon, but don't expect an appointment fast, they are like gold dust. You might have been born with it or it may have grown later on. It will probably be monitored to see how fast it grows. Now, go away and don't worry basically.
She wouldn't print out the report on the MRI for me. She told me she couldn't print out from her desk. She said, you will have to ask your GP for a copy.
So I came home and goggled. As always, it's quite frightening. A cyst that can grow and put pressure on your spinal cord and obviously cause neurological problems. Sometimes surgery is required to release the pressure, either at the base of the brain or to drain the fluid, depending on what type it is, how long it has been there and how fast it is growing.
I specifically asked her if it could explain my back problems etc and she said no, not likely. But when goggled, the symptoms are listed as increasing back stiffness and relief on sitting down. Headaches. Bowel issues.
Plus, there can be links with lupus, which again she never explained. It can be a sign of Central Nervous System Involvement. Which is treated with high dosage of steroids and/or infusions to reduce the swelling, which is causing the blockage and stopping the spinal fluid draining as normal.
Also, linked to vasculitis, which I have suspected I have for some time. She has mentioned it verbally but never documented it. I really dont think she has a clue about lupus and does not have the courage of her convictions or the balls to sort me out.
So, wondering if anyone else has had a syrinx on their spinal cord. What are your experiences. What treatment did you receive? How long did you wait to see a neurosurgeon?
(SCLE, slight hypermobility, osteoarthritis in hips and knees, varicose veins, various allergies, bunion on my left foot etc etc).