So I went to the neurologist for a second opinion today. I don’t normally write about things until a diagnosis is confirmed, but this neurologist suspects Multiple Sclerosis (MS). And even if its not MS I have some major neuro issues. No kidding.
He did a nerve conduction study on my lower limbs. I have constant pins and needles in my feet and sometimes my whole leg goes numb, usually only at night. My arms go numb as well sometimes, and it’s not the kind of numbness from sleeping on them funny. This numbness is like my limbs aren’t even there.
The nerve conduction test showed the problem was coming from my lumbar spine, L5/S1 to be precise. Definitely not tarsal tunnel syndrome.
He gave my several physical tests, and found things I didn’t even know about. I failed all the balance tests. He said I have ‘significant lower body weakness’, and asked me why I hadn’t seen a neurologist sooner. I said I had, and that my previous neurologist diagnosed peripheral neuropathy. This neurologist said it clearly is not peripheral neuropathy, but a disease of the central nervous system (CNS), something like MS. And with my autoimmune history, and clinical story, we need to do more investigations.
I told him the weakness had been blamed it on hip and lower spine arthritis. He said the kind of weakness that I have could never be caused by any kind of arthritis. He felt it was MS. He said the other possibility was stroke. I told him I had tiny strokes on my MRI, but my previous neurologist said they were tiny and nothing to worry about, and the MRI was mostly normal.
He pulled my previous MRIs and told me I was very young to have thalamic strokes, and small vessel disease of the brain. He said my MRIs would only be normal if I were 80. He did agree with my previous neurologist that small vessel disease and white matter lesions don’t usually cause the symptoms I have, but it is possible. White matter lesions could be caused by MS, or by small vessel disease. He also noted a tremor in my right hand.
He said the balance, memory loss, numbness and pins and needles could all be stroke related. Even though the strokes were only tiny – 3mm and 6mm – and they were more than 18 months ago. The thalamus is a very busy place. He found my left side to be significantly weaker than my right side. I can’t flex my left ankle at all, nor my left big toe. My left hand is my problem hand, and maybe not all of that is cubital tunnel. My right side is my dominant side, and everyone is stronger on their dominant side to a degree. I never realised my left foot didn’t work to that extent though. But these things come and go.
But I can’t lift or hold either leg up while lying flat on my back, and I used to be able to. That and other things made him feel it is a disease of the CNS. His gut feel. He is the local expert in MS, so his gut feel probably means a lot. He asked me how hard it is to keep walking. I said very hard. He asked about pain, and I told him I have daily arthritis pain, so I’m very used to living with pain. He said he thought at least some of the pain I have is not arthritis. My rheumatologist would concur. She will be pleased.
He didn’t say much more. I don’t really want to think about it anymore. I have really had quite enough of medical problems. If it is MS though, it would be a milder, remitting, relapsing type. Some days are far better than others. Still an optimist. Sort of.
It does, however, limit which drugs I can take for my rheumatoid arthritis.
The next step is to have a lumbar puncture, so that’s scheduled for Thursday. I cancelled a bunch of appointments so I would not spend the school holidays running to doctors. Oh well. Can’t put this one off. It will take three weeks for the results and then it’s back to the neurologist in four weeks to find out more.
In the meantime, I’m going to gym.