Hi everyone, I’m 45 and was diagnosed with relapsing-remitting MS last Wednesday. It started when I developed numbness down my right side and then leg in mid-Aug so I went to my GP. He referred me to neurology and 3 weeks later I saw a neurology doctor, then 3 weeks after that I got MRIs and lumbar puncture done. Another 2 1/2 weeks after that I got my verbal diagnosis. Since my initial GP visit my symptoms have spread to my left leg and up to my left side and just in the last few days I’ve developed tingling in my left pinky and ring fingers and a lightheadedness, particularly whilst walking. I can still get about and drive but I’m worried things will just continue to get worse.
I work as an artist and prop maker and I’m terrified of losing the use of my hands. I just feel I’m going to lose everything in one fell sweep. I know that is the same for everyone here but I just feel so down about it. My work is my life and my passion and it scares me that I will lose the ability to do it.
I’m really grateful that my GP and neurology took my symptoms seriously and saw me relatively quickly. I’ve been reading in posts how many of you have waited years and been told you didn’t have anything wrong with you which is outrageous.
On Wednesday I was shown my scans at the diagnosis appointment, which I found really scary, and was pointed to all the little “white matter” dots on my brain and a larger one in my spine. The doctor just kept saying, “…and another one here, and here, and here…”. I just wanted to run out the room and was shouting in my head for her to stop saying it. My mum was with me thankfully which was a great help, she is an amazing lady and I’m thankful I have her.
The diagnosis was confirmed because I had told them about a left side facial numbness I had about 3 years ago. I was referred to neurology by my GP then (a previous one) but I never got an appointment and I never followed up as the GP said it could be over 6 months before I would get one. And so, the numbness cleared up, though I still have residual numbness in the roof of my mouth and I kind of forgot about it until this all happened from mid August this year.
The neurology doctor was really calm and kind and told me about what they had discovered clearly so I understood but I was in shock. She asked if I had any questions and though I asked some arbitrary questions like what may have caused it, which of course she couldn’t answer, it only occurred to me much later that I wasn’t really given much information on what happens next. She did give me a phone number for a specialist nurse who I could speak to if my symptoms worsened but otherwise said that the MS team would be in touch at some point but that it would be months before that happened. I’ve seen in posts I’ve read here that that seems the norm? I just can’t believe they didn’t offer me any drugs or treatment that could relieve my current symptoms now as they have been going on and progressing for nearly 2 1/2 months and don’t seem to be going away. If I have to wait another 3 months before even talking to someone surely that will cause more damage to my brain and spine? If anyone has any advice on whether getting some sort of treatment sooner would make a difference or if it would even be possible, I’d really appreciate it.
I do feel a bit lost and worried that waiting will progress this disease quicker than it needs to. I only found this forum through Google search as I wasn’t given any support information other the phone number of the specialist nurse which I was told to only phone if my symptoms got worse. As they have increased/changed I’ve decided that I’m going to phone the nurse on Monday and ask the questions I couldn’t think of before but if anyone has any input I would appreciate it. I’m in Glasgow, I know different areas will probably have different ways of going about things. My emotional health has taken it’s toll for sure as it seems my world has suddenly crashed down around me.
Sorry for the long post but I live alone and only spoken to my mum and messaged one friend about it as I can’t face telling any of my other friends yet so I think I just needed to get it all out. Speaking to people who have gone through it already can only help and I’m grateful to have found you.
Thanks so much for listening.