Hi all, below is a mesaage ive sent to MS society on facebook. I feel like im going round in circles and dont know what to do. I feel like its taking over my life. Any advice would he greatly appreciated!
Thanks ,
Lloyd
I’ve been having problems with - pins and needles in my toes, muscle spasms, brain fog and struggling to find words, balance issues, memory issues, sight loss (blurred vision, and double vision). I do also get mirgraines which come with aura, however a lot of the symptoms happen without a migraine. I’ve had all of the above for years but have often passed them off, however they are now becoming more frequent.
I have visited the doctors who referred me to Neurology but my appoinment isn’t until October 2024. 3 weeks ago, I visited A&E because my left arm was weak, I couldn’t think properly and whilst I was in the hospital my bum and the top of my leg were twitching. I had an MRI referreal and had it just over 2 weeks ago - the results have come back clear.
Since then, last Wednesday, my left eye was totally blurred for 24 hours and the colour was dull. It did get better by morning which was a relief. Since Sunday, I have felt totally exhsuated, sick, had bowel problems. Then last night during a work meeting, my vision went again and this was followed by a migraine
I have called 111 and have a telephone apt with a doctor tomorrow - I have no car as I have to be driven home from work due to loss of sight. I can tell that something isn’t right. The doctor at the hospital said that my syptoms sound like MS and although it sounds strange, I have a gut feeling that it could be, even though my MRI results have come back clear. I’m worried that it’s all going to be put down to my migraines and wondered whether there there is some help or advice that you could give me please?
Hi Lloyd
When you had the MRI did they do a full brain and spinal MRI? I recall when my MS journey started out, the initial MRI was a cervical (neck) scan to check for compression on the nerves serving my left arm, which came back clear/normal. I was then referred on to Neurology who requested brain and full spinal MRIs.
Bit of a daft question, but have you been to an optician regarding the vision issues? They can often spot signs of optic neuritis during the eye tests, especially with the scans they take of the retina - mine loves pointing out some of the weirdness going on with my eyes during my routine eye tests.
In the meantime, I hope the call with the GP goes OK, see if they can bump you up with referral ladder.
Hi Theresa,
My MRI scan was just of the head, however after lots of reading and research, I’ve learnt that it should have probably been a scan on my spine too. I went to the opticians in August and had all of the extra tests done too - all was fine which was relief.
I’ve spoken with my doctor today - he has requested some more blood tests to rule out different conditions and will then speak with the Neurology team to try and get me seen quicker than 11 months time! Feel very grateful that he’s going to do that for me.
Today though, I’ve woken up with a dull pain running through my legs that comes and goes, and also a tingly feeling in my left hand.
It’s so frustrating because I feel like nobody really believes me and thinks that I’m making everything up - I don’t know whether this is a common feeling?
Thanks for your reply :)!
Hi Lloyd
It is very common to feel that people don’t believe us, there are times when we start to doubt ourselves too. The range of symptoms that we present with are often very strange and don’t appear to tie in to anything definite. It can and does play on our minds.
Thankfully your Doctor seems to be on the ball and has started the work of tracking down/ruling out other conditions and trying to speed up your neurology appointment. If it is MS, it could take quite some time (years even) to reach a definite diagnosis - it took 9 years to get to a dx of MS for me, and there are others on here who took much, much longer than that; or, you could be diagnosed very quickly once the neuros are on board, such is the way of MS.
Hi Lloyd, I was in a similar situation where I felt no one was listening and found myself going round in circles for nearly 3 years. I knew something wasn’t right, the doctor kept sending me for multiple x rays and scans on my knee thinking that was the problem. I was sent to see an orthopaedic surgeon who said there isn’t anything wrong with your knee, I told him there has to be something wrong because of the way I’m walking, I was pretty insistent that I didn’t feel right. He asked me to walk down a corridor which I did, he then said there is actually something really wrong and I was sent for an urgent head and spine which showed lesions on both. What I’m trying to say is if you feel there is something wrong you have to keep going with it, in the end someone will listen. You know your own body. Good luck and let us know how you get on, Angie 