Hello all. I’ve just registered with the forum, having been a browser for a couple of months now. I hope you don’t mind but this will be a bit of a long post but i thought it better to say it all at once!
After seeing my GP in October, it was suspected by her that I might have MS and I have been on the road of investigations since. Although I’ve experienced several symptoms for years - such as pins & needles, numbness, fatigue, restless legs, stiff muscles, brain fog etc - I’ve never sought any help as i just presumed that was just the way I was! I didn’t even think to question things 5 years ago when a Physio told me that my entire nervous system was “completely inflamed” - she just told me to take ibuprofen every day, ha!
Anyway, the reason it came to my GP’s thoughts was I had an eye test a few months ago and i complained that I’d been experiencing central vision loss in one eye and now and again, some pain. The optician couldn’t see any issue and thought it might be vascular so wrote to my GP. My GP did a wide range of blood tests but the only thing it has picked up is slightly low iron. I also had blood pressure tests and no issues. I was then she thought about MS. MS was something that had never crossed my mind but when she read out the list of symptoms, i could definitely identify with a lot of them.
I was referred to an ophthalmologist for a better look at my eye (still waiting for that appointment) but I saw a neurologist yesterday.
As I had very helpfully read on this forum (which I have to say is such a fantastic source of information and reassurance, thank you!), I took with me a brief history and list of symptoms to pass to the neurologist. During the consultation, I tried to pass this to him but he said he didn’t need it (his bedside manner wasn’t the best!). He asked me to just talk through what was going on so I started with what had started this off - the sight problem, which i’d only ever experienced this year since the summer. He wrote it down, nodded and then said, “ah yes, migraine”.
I then told him about all the other symptoms I’d experienced for at least the last 5-6 years and as he wrote them down, he made little comments like “stiffness and pains are not neurological problems”. I also mentioned how worrying the brain fog had been as there is a long history of Alzheimers in my family, but he just said “well, one in 10 people get that so its just one of those things”.
He let me speak and then tested my balance (wasn’t too good - had to hold on to him to stop myself falling) and walking, touching my nose etc. He then sat me back down and said that as far as he could see, there was no neurological problem and I had silent migraines. I had never heard of ‘silent’ migraines before (I rarely have headaches), but he said all the symptoms pointed to that, especially given the eye problem. I mentioned that I’d only had the eye problem for a few months but the other symptoms had been present for years and were quite debilitating at times but he was adamant that there were no other issues than migraine.
However, he then referred me for an MRI saying that it is likely to show “white spots” but he would know that they were migraine lesions and “definitely nothing sinister like MS”. He then sent me away with a prescription of Gabapentine for my restless legs and pins & needles.
Having read up about silent migraines since, I can see that the symptoms are very similar to those of MS so he is the expert and he obviously knows more than me. However, I did come away from the appointment feeling less than listened to and that once he heard about my eye problems, that had made his mind up. Whilst I do not wish by any stretch of the imagination to be diagnosed with MS or any other neurological condition, I feel a little bit lost by it all.
Apologies again for the epic length of this post, I really do appreciate your time in reading it. Thank you all.x
Lindsey