Don’t really know what to write or how to approach this, I am hoping I can ramble my way through it with your support.
Been through the mill since I was a teenager, past 4/5 years had periods of severe illness followed by uplifts, (I’m 38).
After sufferring horrendous headaches and balance issues, I had an MRI about three years ago and blood tests, in the follow up with the Neuro I was dismissed as having migraines and given an injector pen and told to manage. Again after a bad bout and severe numbness in my limbs, no sensation beneath the knees for 3 months, my GP was treating me for B12 deficiency without much luck. I was referred back to the Neurologist for tests to rule out Neuropothy After an extensive MRI, further blood tests, the Neuro ruled out B12 and Neuropothy. Apparently in the first set of MRI scans (three years previous) showed an number of marks on my brain, little white patches and my blood had an “abrnormality”. The second set of scans also showed marks, however in different places, the first set had gone. My blood again had abromalities. The Neuro is slightly eccentric, so speaking with him is a little like pulling teeth. After a bit of awkward conversation and me asking him what this meant and what we should do, he said we could best guess, or I could go for a lumbar puncture. Having been prodded and best guessing for near on 18 years for various things, I went for the lumbar puncture option, this being the third one in my lifetime, it’s a considered decision as the previous two were done in emergency situations. The Neuro believed I was suffering from Idiopathic Intracranial Hypertension, a condition previously suspected and treated unsuccessfully. He flirted with MS but said highly unlikely and that I shouldn’t worry, I drove home in tears and only because of an immediate family emergency, I snapped out of it and put it to the back of my mind.
I went for the lumbar puncture, not a fun experience, but pleased it was out of the way. The specilaist wrote to my Neuro, GP and myself, the letter didn’t say too much it was just a load of numbers and stats which didn’t make any sense to me. My followup appointment was yesterday, I tried to go on my own but my partner insisted on coming. The long and short of it is that I tested positive for bands in my CSF, alongside that I have high readings in my blood which relate to Antibodies relating to Lupus. The Neuro isn’t sure if one is mimicking the other or whether both are presenting issues. That was a bit of a bodyshock, it’s a weird moment when you know you’ve been really ill, you’ve battled it. But when someone makes it real, it’s a mix of shock, relief and terror. The approach now is that I have had further bloods taken to see if the Lupus reading has worsened again, I will clear myself of this horrid headcold I have and will then be checked over by the GP and started on a course of steroids. The Neuro has said that it can take 5/6 weeks to feel an improvement and that I should come back and see him afterwards. He doesn’t want to make a diagnosis until he is sure.
My head currently is reeling, I am a very private person that plays down what goes on witihin me. Last year I took one day of sick, that is a bad run for me! I work hard, I workout hard and I persevere through most situations. I’ve heard of Lupus and the only thing I heard was that a reality TV star had sufferred badly and died from it, so reassurances there. I’ve since had a read and reassured myself about it, my symptoms don’t really fit, the only one that does is a brown butterfly mask on my face that I was told is malasma. I don’t know whether to tell those nearest and dearest to me or not, life is full of stigma and fear and I hate to be tarred with either/both.
I suppose my plan is, adapt and conquer. Get over this cold and start a treatment, see how I respond to it and what my symptoms do and see how the blood test comes back. I will then go back and see the Neuro and work out what we do next. I will educate myself on both illnesses and do my best to improve my quality of life, it’s all I can do I guess.
THOUGHTS:-
Do people get MS & Lupus at the same time?
Anyone else been in this position?
Do bands appear in your CSF but not your blood sample if you don’t have MS?
Thanks for reading, hope to contribute more to the forum as I get my head around this and learn to manage and improve on my condition.