Brace yourselves: I’ve just reviewed what I’ve written and it’s looong. I just don’t know what to leave out and still explain everything.
Firstly I just wanted to say thanks to those of you that answer questions from those who come here to ask questions because they’re worried and/or undergoing tests. Given the kind of tiredness that seems so characteristic of MS, it seems to me it would take a special kind of patience and generosity to respond to, support and reassure those who don’t have a diagnosis.
That bracket includes me. My doctor is currently referring me to a neurologist (as of Friday), and I am booked to have blood tests done, but that’s it. In fact, the only reason I know that MS is on my doctor’s radar is because I recently listed all the symptoms I could, and looked them up, and MS showed up as a possibility. When I saw my doctor on Friday, went back over the timeline and gave her the list, the questions she asked were a good match for the lists of ‘typical’ symptoms that you find – some of which I have, some not.
The big strike against what I’m experiencing not being MS is that - apart from infrequent noise and light sensitivity - my symptoms started after a knock on the head in 2009. I had a CAT scan and all was ok, but I had 6 months of severe symptoms (main ones being mobility and coordination problems, sound and light sensitivity, nausea, exhaustion, problems formulating words even though I knew what I was trying to say). I saw a neurologist and he said it was ‘probably’ post-concussion syndrome and that it would clear up.
Things did seem be getting better, in fact… until around a year and a half later when I had a severe relapse that lasted several days and what seemed like a month-long ‘hangover’ (head pressure in particular).
I saw another neurologist and he said the head injury had probably triggered migraines. No further tests/checks were run. I was a bit confused because, although I do get headaches, they’re nothing like the ones usually associated with migraines (not that level of pain): it’s the other symptoms that are more disabling, and the head pressure I do get seems to affect my whole head. However, I know there are atypical migraines, and migraine remains my current official diagnosis.
I had the odd episode like the one mentioned above over the next couple of years, and I just got into the habit of thinking the migraines+hangover would last 2-4 weeks but I could get away with many months in between.
I was also getting odd hip and back pain that would take my breath away, and, for a short while tightness like a belt around my rib cage which made it really difficult to breathe. At the time I thought it was just one more thing that was going wrong with me, but now I wonder if it’s connected (still get the hip and back problems at times). However, the x-rays and lower back/hip MRI all came back ok, so the rheumatologist said there wasn’t anything they could see to help with, so it might all just have been referred pain from a parasite infection I picked up in India.
Then last December, following a very stressful time at work, it happened again, this time preceded by brief ‘stabby’ headaches (not sure they even class as ‘ice-pick’ headaches, as I’ve seen those referred to as lasting seconds, and mine are less than that). And this the episode-hangover-episode-hangover pattern has just gone on and on.
I’ve tried a variety of migraine relief (triptans - no use) and preventatives (propranalol, amitriptyline, and now citalopram), but the problems keep coming. I thought I was onto a winner with citalopram when, about a month in (earlier this month), I had a wonderful week when I felt wonderfully normal – woke up completely ready to get up, vision was normal, I felt like I could breathe properly, and I bounded about the place proclaiming a miracle (!). But then it all hit again, and now I feel really demoralized (had forgotten how good normal feels).
Since December, head pressure, tiredness, lack of focus, forgetfulness, neck tension, light and sound sensitivity, and spatial awareness problems have been pretty much constant. I’ve been coming home from work a wreck and even having to lie down at work.
When things start to get worse, I notice the l/s sensitivity and head pressure ratchet up, my limbs start to go very weak, I feel disconnected (even from parts of my body), lack coordination and find it difficult to be sure where my feet are. I have problems finding and formulating words too, and have some slight finger and facial tingling and numbness.
If I don’t stop immediately, things can get more severe. Perhaps most scary was when I was on a journey, and ended up slumped at a station cafe, unable to move, with the right side of my face drooping like I’d had a stroke. I felt like I was trapped in my body, and I wanted to cry but hadn’t the energy to do so. That’s happened once since, and I’ve also noticed that my hands contort and freeze up when I’m on my way to being like that (major difficulties in holding and moving cutlery).
I was seeing a different doctor (who I think just assumed I was being a hyperchondriac) when all this started, and my current one is very good and clearly taking me seriously.
But I am feeling shaken. I suppose up till now I’ve just been trying to manage and reassuring everyone that, however disruptive my episodes are and however frightening they can be to watch, they’re just migraines. Then I had that great week, which reminded me how normal feels, and that shocked me into making the list … and that in turn shocked me.
Anyway, thanks for listening. I’m not expecting diagnosis. In fact, I’m not sure what I’m hoping for. Perhaps just people to tell me that I’m not crazy. - Actually, I don’t think I am, but all this might just drive me to be so!
Any practical advice would be really handy. Pain killers seem pretty useless, so the only things I have that help when the episodes hit is Vicks (slathered all over my forehead) and ibuprofen gel (slathered all over my neck). Oh, and I can about an extra 15 minutes out of an apple, which can help me buy time to get away from problem situations.
P.S. Does anyone know of a link between concussion and MS or is this just completely unlikely?