Usually quite an upbeat active happy person, had the absolute weekend from hell and really don’t know what I’m at.
After about 20 years of mis-diagnosis and weird symptoms that have been building, I am finally getting somewhere (?!). For the last 11 months the symptoms have been far worse, migraines, pain, numberness, eyesight issues, fatigue, spasms. Neuro has written to my GP after two MRI’s with lesions 3 years apart and a positive O band Lumbar puncture amongst other things to say it’s pretty much MS until further tests are comfirned and a diagnosis is made, possibly with the issue of Lupus present as ANA readings raised, although this can be attributed to MS too.
I am fairly pleased that I’m on the path to finding out what’s wrong, whatever it is and making a plan of attack to do my best and limit it’s impact on my life. On the other hand I’m just mega confused, I know diagnosis takes time and I appreciate the Neuro being thorough and actually his lack of beside manner means it’s all about facts. But it’s hard to convey to people exactly how you feel. just for information, as you permanently sound like a whinger/attention seeker. Only my bosses, my family and my poor longterm partner know, I only really discuss it with my partner. It’s worse when you are in a relapse of sorts. You could write a book on the symptoms, only the spasms and cognative confusions are visible with me.
I have just gotten over a virus that not only made the relapse fairly evident, but took two courses of strong anti-biotics to kick it out and 4 weeks of urgh. I started my steroids saturday, 500mg of M(something) and tummy settlers, taste vile but manageable. Coincedence that on starting them I spasmed more than I have in my entire life? Bad backache and unstoppable spams with insomnia? Do they attach to the area causing the issue/inflamation and flare it before reducing?
Yesterday was a hard day, my poor partner was lovely, I had two out of character massive anger outburts and inconsolable crying fits… I was in pain granted, but never done this before. I apologised profusely and reassured that this wasn’t their fault, that I was in pain and frustrated at my usually active lifestyle just coming to a halt. Simple things like feeling my feet and seeing properly would be a luxury!
Must have kicked something out as last night I slept well, woke up this morning to a bright red tomato face which is buring hot ha ha, god it looks silly! Spams seem to be relaxing a little, but eyes are blurry and I’m bumpy on my feet.
I think I am a lot better off than most, just dazed and a bit ugh…
Have an appointment to see the Rhumie next week and back to see the Neuro 5/6 weeks time… at least things ARE chugging on. The further we go the scarier it can get, nothing has fundamentally changed though, I just have a name for it possibly and just a glimmer of hope for recovery and improvement… trying my hardest to be positive here.
Don’t know what I’m getting at, just hoping to reach out to people that understand I guess…