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Doesn't look like I'm struggling for words after all...!!?!

Hi all,

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.

Thanks!

cc x

P.S. Does anyone know of a link between concussion and MS or is this just completely unlikely?

What a rotten time you have been having. Well done, keeping upbeat and reassuring the people who are worried about you - I honestly believe that this helps everyone, including the person with the problem - but that’s no use at 0400 when the worries start piling in, I know. So I am very pleased that you seem now to have medical advisors who are listening and keen to find out what ails. Keeping the smile flying while struggling to find anyone to take one’s problems seriously is hard and lonely work.

I don’t know about concussion and MS. There is certainly a view - whether scientifically proven or just anecdotal, I do not know - that a traumatic life event, whether sudden or chronic, sometimes precedes the appearance of MS. But that might be nonsense, because life is tough for a lot of people a lot of the time, and very few get MS, so who knows? Your neurologist might.

Anyway, I hope that you are on the way to finding out what is the matter. No advice, I’m afraid, beyond suggesting that you try to pace yourself emotionally and settle in for what might be a long haul. Neurological stuff is ofen hard to pin down, and it can take time and patience. It is good if a person can just plod along, trying not to get ahead of him/herself and letting the investigation process play iteself out.

Good luck with it all.

Alison

Hi counterclockwise.

I agree with Alison. Some other, as yet unknown factor, is known to act as the trigger to kick start the MS condition. That said, of course, you have to have those dreaded MS genes to begin with! But, let’s not try to run, before we can walk!

Multiple Sclerosis is notoriously difficult to diagnose, because there are other neurological conditions that can mimic MS.

This said, your GP is taking the correct course of action- obtain blood tests and referral to a Neurologist.

Unfortunately for you, it’s a case of keeping calm and having patience.

The following NHS website is very good and informative, as far as Multiple Sclerosis is concerned. Blood tests and all the other useful diagnostic tools are very clearly explained.

Good luck and keep us posted.

Best wishes

Tracyann x

Thank you so much Alison and Tracyann - for the welcome and suggestions.

It’s funny: before I hit my head, I suffered from depression and so was on antidepressents with occasional breaks. I was on one of the med-breaks and about to have to go back on the tablets (all the signs were there) when I hit my head, but then the depression just seemed to have disappeared with the knock. With everything that’s happened since, I’ve had ideal conditions for it to resurge, but it hasn’t, and even I’m sometimes surprised at how well I’ve been taking everything - probably part of the reason it’s taken me so long to explain fully to my doctor how bad things can be! Of course, the irony is that I’ve been back on the old antidepressants for a couple of months now anyway in an attempt to prevent the head episodes (assumin they’re migraines). Ah well… it’s not hurting me, and it might just help!

The NHS site was a great suggestion, thanks Traceyann. I begin to realise how little I know, and I’m a firm believer in finding out at least a bit about the processes you’re letting yourself in for!

Thanks again.

cc x

Hello again –

Well, I finally saw the neuro on Tuesday, and she’s diagnosed “episodic chronic fatigue syndrome”. I didn’t know there was such a thing, and a web search proves futile. Maybe I misheard. Anyway, of course I was having a good stretch… less so since then after the stress of that day, but I think anyone would be a bit winded. She did alt least seem to appreciate that CFS isn’t all in the head, and said she had heard people refer to all my symptoms before. She also said that I shouldn’t expect it to get better, and should look into dropping hours at work. I had to push her on how I could possibly get support to work out how to proceed and manage symptoms.

What she didn’t do was go through the timeline and list of symptoms I had (just asked me to tell her what I was there for, which is hard to keep together sometimes… hence the list – I left her with that so at least it’s on my file). She seemed to want to tie the CFS to the giardia infection I got in 2011, and I think she may have tied my diagnosis to that before I got in the room. Unfortunately this all began after the head injury in 2009. (Or possibly before: I’ve done some soul-searching over the last couple of days and remembered various illnesses and all the tiredness I had between 2004 and 2009 as well.)

The neuro didn’t offer to order tests… which p*ssed me off a bit: surely that’s essential, even if what I have is CFS (got to exclude the alternatives first, and CFS/ME/MS all have rather similar symptoms). I’ve had a load of blood tests, and know things like diabetes have been excluded… but what about an MRI?? I was really worried about seeming like a hypochondriac, but eventually managed to put across that it would make me feel “more comfortable” with my diagnosis if I could be sent for an MRI. She has agreed to this at least, and it should come through in the next couple of months.

So this is part update, but also part for the benefit of anyone else going through tests and appointments like I am. My big advice is (a) to make a list and insist that the neuro reads it; and (b) to practice how you’ll ask for an MRI if you’re given a CFS/ME diagnosis: they are similar in symptoms, and, from what I’ve read since, it’s irresponsible of a doctor not to order tests before handing out that diagnosis. I wish I’d thought about these rather simple things before I got to the appt.

Anyway, that’s the story: I remain an outsider to MS, but might have said something here that helps others.

cc x

I wish I had something more useful to say, but I cant imagine anything more you could do other than what you’re doing.

It’s so frustrating, not having answers or any treatment.

Like you I’m in the system, seeing drs who v slowly are moving forward.

It’s hard to not keep thinking about it but I need to as its 2 months til the next appt and getting my results,

so if you can find a way not to keep thinking about it and live life I’d recommend it, but it’s not that easy!