Hi, I wonder if anyone has any experience of neurological issues from lupus and can help me decide which consultant to believe please as their treatment plans are different!
I have had lupus for about 6 years with various manifestations, approx. 2 or 3 flares a year, some more serious like neutropenic sepsis and pericarditis and some with sore joints/fevers/fatigue and 3 with neuro issues like this current attack just less severe.
In May I became very unwell with confusion, difficultly walking and talking, uncoordinated, dizzy and severe lethargy. The GP gave me a steroid injection and then I've had 2 doses of tapered steroids since which have an enormous impact on my energy and relief of symptoms. The really severe symptoms have lessened but still very fatigued and pins and needles in various limbs a lot of the time especially at night. My left side is weaker and my left hand still not right. My left side of the face was numb and I started having problems swallowing and choking so went to A&E a few weeks ago where I saw many Drs and consultants who said the following:
A&E Dr - (very young but very thorough) - you have vasculitis (admitted me)
Hospital general Dr - Your blood tests are normal, you've been here with a few different things in different parts of your body and your ESR is always normal (think he was implying I was a hyperchondriac!)
Rheumy registrar - it seems a very neurological attack, I'm handing you to neuro.
Neurologist registrar - your body is just weak, your ANA isn't even positive today so I don't think you even have lupus (I explained I'd just stopped high dose steroids and that can happen) - you have fibromyalgia, you just need to motivate yourself to get stronger and should stop taking steroids like smarties. Nice guy...obviously I have ignored him in my decision making because he was that terrible combination of arrogant and ignorant!
Neurologist consultant - you have hemiplegic migraine and you have become 'stuck' in a constant chronic migraine for 3 months. There is no treatment (I have had hemiplegic migraines before but for hours rather than months and I had none of the normal flashing lights or awful headache this time)
So I then had an appointment with my rheumatology consultant (different hospital) who said - you have CNS lupus and must start immunosuppressents immediately as it is life threatening and why did you stop the steroids and why didn't the hospital MRI and lumbar puncture you?? You need to take 40mg a day for at least 6 months.
So I don't know what to think!! I hate medication but I also hate having no energy to do anything, cognitive problems, keeping on falling over, my kids saying I've been 'weird' since May etc. The rheumy was adamant that I had no choice so I've just started all his drugs but what if the neurologist is right and it's a paralysing form of constant migraine and all these drugs are unnecessary and harmful?!!
Has anyone had anything similar please? Any suggestions? Thank you!