I was diagnosed with MS less than two weeks ago. 'It's probably MS / It looks like mild MS' were the words spoken by my Neurologist; so understandably, I've gone ahead and done a whole lot of research and will more than likely get tested for Lyme Disease on my own accord. Just last week, as I was sitting in a recliner chair in hospital getting my Methylprednisolone infusion, my Neurlogist came to see me. I had asked about being tested for Lyme and he had done a 180 with his tone and language. I felt that he was being condescending, belittling and failed to show any form of compassion.
"I don't know why you're researching."
"You probably know more about Lyme Disease than me" (When I had asked if testing in Australia looks for co-infections).
"I wouldn't research something that there's no proof of.'
The above are just a few of the things that were said to me. My fiance and I were shocked. So it's a no-brainer as to why I'm currently looking into being treated by a different specialist.
During our conversation, I had a seizure which he finally gave me medication for. Mind you, I had mentioned the seizures on my visit the week before and he brushed it off by telling me that the steroids would help. I was on Tegretol for 3 days and simply couldn't take the drug for any longer. I had emailed the Neuro who advised me to stop taking them if I wasn't getting any benefit from them. The seizures only effect the right hand side of my body. When they first came on, my body would lock up and my hand would clench up. Try and place your four fingers onto the tip of your thumb - that was the pattern that my hand would lock up in. These episodes last for about 15-30 seconds and then go away like nothing ever happened.
So here I am today. I've had two 'episodes' whilst writing this post and from what I've read, seizures are rather uncommon with MS, effecting only 3-5% of MS patients. Tomorrow will be three weeks since my seizures started and whilst they seem to be getting a little better (it could simply be my body adapting), I'm still having 30 + episodes a day.
I'm not in denial regarding my Neurlogists diagnosis, but like many others, if I'm going to be on treatment for the rest of my life, I want to ensure that the Doctor has the diagnosis right. I guess I'm reaching out to see if there are others on this board who've had similar symptoms and if so, what have you used to treat them?