I’ll be as brief as I can!
A year ago my symptoms started with numbness and pins and needles in the left side of my body, my first MRI scan showed inflammation in the T5 part of my spinal cord, but my brain was clear. I had a 500mg 5 day course of steriods, and was put on Nortripyline. I had a follow up MRI scan with no change, but my symptoms were not going away. I’m going to fast forward to December, when i next saw my neurologist, my symptoms had got alot worse, I now had very stiff joints, pain/crushing feeling in my torso, and pins and needles permanently in my freshing cold left foot. My neurologist requested a lumbar puncture, and my medication was changed to Pregabalin, the lumbar puncture showed the abnormal proteins linked with MS, so I had another MRI scan, this has shown no change, but the abnormalities that were there have gone! I know that this is good news, but why have my symptoms got worse? I have been told that all other possible causes have been ruled out, please can anyone on here help me? Thank you Sarah, (a mad mum)
Hi, I dont feel able to answer your questions, but I`m sure someone else will be along soon for you.
But I just wanted to say welcome and let you know that although your post was aired yesterday, it can sometimes take a day or two to get replies.
Hang on in there chuck.
Thank you, I know that there are lots of people in the same position as me, it’s just so frustrating as people just don’t understand and don’t get it when I say I’ve had pins and needles 24/7 for a whole year, they think I’m a bit crazy.
i really feel for you cos the not knowing is the worse thing ever.
don’t know what else to say.
there’s something wrong with your body and the neuros are ruling out ms.
but there’s still something wrong with your body.
hope you get answers soon
The not knowing for sure is definitely the worst thing ever. I was told that the lumbar puncture had the abnormal proteins that are connected with MS, and that everything else has been ruled out, that’s the confusing thing?
so what does your neuro think the next steps should be?
have you told your gp?
maybe the gp could ask the neuro if he is difficult for you to contact.
remember House (the doctor) ?
we could do with docs like that.
If you find one, doctor House that is, let me know I need him too
I’ve spoken to my neurologist, and she said that she can’t confirm if it’s MS or not, but at the moment my brain scan being clear is good news. She said that it is confusing that my MRI results show that there is inflammation, so it’s just a case of waiting to see what happens next! It seems to be that most people have to go through a couple of years of living in limbo, I guess I’m just one of them…
House was an American TV show with Hugh Laurie as a brilliant diagnostician. It was a great series, he would diagnose the most bizarre diseases. He was a total lunatic as well. It was a great series. I watched my way through all of it over a few months some years ago. He’d have had you sorted out with tests, diagnosis and medication within a couple of days. We could do with a few neurologists like that.