Shall I mention MS to my GP?

New diagnosis and before diagnosis
1

Hello Everyone,

I am 42 years old and I have been trying to get a diagnosis of, well, something that will help me understand what is going on with my body for nearly 10 years! A friend mentioned MS and looking at the short films on this website, especially the references to fatigue and the information about symptoms becoming worse during menstruation really struck a chord with me.

Here’s (briefly) what happens to me. So far, I have been told it is Post Viral Fatigue (although that was 7 years ago!) very severe PMS and stress. I used to work in a very tick-ridden area, so I have had a test to rule out Lymes Disease (which my GP was very grudging about) Four years ago, I also had a Mirena fitted, which really did lessen the severity of the symptoms for a couple of years, but last year was awful and I really want to start the New Year with a more positive outlook!

Anyway, first the fatigue. It comes on slowly and feels like my forehead and around the bridge of my nose are hot and tingly. It almost feels as if there are things moving about under the skin! Accompanying that, I begin to feel as though I am coming down with a really bad cold / flu. I get incredibly tired - to the point where I literally can’t stay awake and focussed at my desk and if I am at home (fortunately, I can work from home) I just have to lie down for an hour or so and even then, it takes ages to wake up properly. I can also get what feels like a tight chest.

In meetings, or whenever I sit for long periods, I can really struggle to stay awake. This can be embarassing (lots of kneck-jerking and trying to yawn discreetly) I can even begin to dream, so I live in fear of accidently saying something out loud connected with the dream at a totally inappropriate moment!

Sometimes, also, my tongue feels slightly numb and for no reason, I start to really stammer and struggle to get my words out. This can happen when I know I am feeling run down and under pressure at work, but also occasioanlly, when I feel tired, but otherwise fine.

Also on a monthly cycle (although technically, I don’t have periods because of the Mirena, but it follows a monthly pattern) I get terrible pain in my knees at night - so much so that it can wake me up. I initially put it down to arthritis / wear and tear, but it does become markedly worse every month. Likewise, I can wake up with a really painful lower back. It really feels seized up: as though I can’t move, but after a couple of seconds, I can and it wears off pretty quickly.

I can go through periods of being incredibly thirsty, yet still wanting to urinate all the time too. On a bad night, I will get up, needing the loo and then go straight to the kitchen and drink 2 pints of water. Recently, I have also started to have really bad constipation, again, on a pretty regular pattern of 3 weeks okay then a week of being really affected.

I had 2 episodes of vertigo not long after the Mirena was put in. These were diagnosed at the time as BPPV, which I understand is not connected to MS, but I thought it was worth mentioning.

In addition, if i get run down, I can also experience sort of fuzzy vision. I can see, but there is a slight wobble to it, almost as though I am watching a TV that isn’t quite tuned in! If I look at really textured surfaces, like chunky rugs, they appear almost to be ‘rippling’. I can also find it hard to focus on 1 spot for more than a second or so and find my eyes darting about.

I get travel sick very easily - just sending a text in a moving car (as a passenger) can leave me feeling sick and just occasionally, I can stumble for no apparent reason after I get up out of a chair. Also rarely, I will be holding a small object like a key in my hand and just drop it! Actaully, I have lost count of the times I have got my keys out and just relaxed my grip and dropped them without meaning to.

Lastly, I can sometimes feel a sensation like a rubber band snapping gently (I wouldn’t exactly describe it as painful) against my cheekbone - usually, just before I go to sleep at night.

So, that’s what is happening! Needless to say, it gets me down and very frustrated at times because at other times, I am very active and fit. I eat sensibly, exercise and when I’m not falling asleep, struggling to get my words out, or feeling like I’m coming down with flu, I am happy and lively and feel great! Last year, I tried again to talk to my GP. The first one I saw was really good and she actually listened while I explained everything that had gone on. She suspected some kind of AI condition and sent me for a chest X-ray to rule out Sarcoidosis. This came back clear (which I was pleased about!) but when I asked the receptionist what to do next, she basically said, “it’s clear - nothing!” and left me feeling like if I were to make another appointment, I would be wasting everyone’s time.

A few months on and I was absolutely desperate! Work was bringing everyone in my department down - not just me and a particularly difficult project was definitely taking its toll. Added to this, my family went through a tough time and I found my symptoms were all coming back, along with feeling really desperately depressed - as though I just couldn’t see where my life was going. The best way to describe it is a sense of absolutely overwhelming dread…with no real idea what I was dreading! Again, I thought of sarcoidosis, having read up on it a little and found an article about a man who experienced just the same thing.

This time, I was alloacted a different GP who was absolutely unsympathetic! He said it was impossible that I was experiencing any symptoms on a monthly cycle becuase the Mirena was a constant dose of Progesterone. He said there was no point in doing any kind of tolerance test to glucose (I asked about an oral glucose tolerance test) because I would know if there was a link to eating sugary foods and feeling low and he refered me to their Psychological Wellbeing Practitioner to learn how to ‘manage anxiety’.

This was a total waste of time! I explained all my symptoms to her and her verdict was that I was not suffering from any kind of psychological disorder, but I ought to go back and see my GP again. She suggested a GP in the practice who is apparently very good at dealing with hormone-related problems (she was again putting everything down to some kind of hormone imbalance)

I haven’t gone back yet. I am fed up of waiting ages in the waiting room, explaining (again) everything I am experiencing and being asked, “what do you want me to do?” I always come away feeling like a fraud and a timewaster :frowning:

Sorry to have gone on…and on! I just wondered if anyone else has had similar experiences and whether I ought to be mentioning MS? I really am at my witt’s end, because the tiredness and fluey feeling just knocks me right out and I am fed up of going through phases of days or even weeks of getting up in the night for the loo. I know it could be a whole host of other things, or even a combination, but looking at the MS site, it’s the first time anything has started to even slightly make sense (apart from Lymes, which the blood test ruled out)

Thanks for reading :wink:

2

It is not usually a very good idea to tell the GP that you are wondering whether this is MS. That is a red rag statement if ever there was one, and an invitation to be told to stay away from Dr Google and get more fresh air and next patient please.

Having said all that, when I first went to the GP, I did ask! - and no one every pretended that MS was not one of the possibles that would need to be eliminated. But then my symptoms were very distinctly straight out of the Ladybird Book of MS: it wasn’t hard to spot that MS would be on the suspect list. Evidently (!) this has not been the case for you. In your shoes, I would be very cautious about suggesting that you think you know what is the matter - the last thing you want to do is to give them an excuse to dismiss you as one of those neurotic persons who are always thinking that something rare but dire is the matter with them. GPs, who know (better than most of us ) that rare things are rare, do tend to go into reassure-and-dismiss mode when they hear a patient mention MS. And this can mean that they stop listening to things that might lead their thinking in other and more productive directions. .

It has been suggested to you that you talk to the GP who is good on hormones. GPs who have a reputation for being good at this or that tend to be the ones who are actually good at listening, whatever else they might know about. So perhaps that is worth a try, armed with a brief summary, with dates, of what has been amiss, but without guiding the discussion in any particular direction. If the GP is a good one, he/she should surely have some view on what might be going wrong, whether hormonal or not.

Good luck.

Alison

3

Hi Ivy, My view is no, you should not attempt to self-diagnose - especially to the GP. No professional likes to feel a layperson is trying to tell them their job - and if you go to the doctor announcing what it is you “think” you have, that’s exactly how they will feel. There are literally hundreds of things that can mimic MS, and you are MORE likely - not less - to be dismissed as anxious and neurotic, if you go in trying to prejudge what the problem is. I have never heard of MS making people extremely thirsty - if I had to guess, that part sounds more like diabetes to me, though I’m certainly no medic, and I wouldn’t go in suggesting that to the doctor either. It also sounds as if there is an issue with depression and/or anxiety - although, of course, that doesn’t mean you couldn’t have something else as well. Unexplained health problems are apt to make people feel depressed and anxious. I do agree you need to go back. However, just stick to the facts, and not any hunches about what the causes might be. You may find it helpful to make a summary list of your symptoms, in order of the extent to which they bother you - most serious at the top. Do NOT just hand it over to the doctor, but use it as a reference for yourself, to keep the conversation in focus, and make sure you don’t leave out anything important. By leaving the more minor things at the bottom, if you do get pressed for time in the appointment - which unfortunately is all too common - you will make sure you’ve covered all the really big things. It won’t matter if you don’t get as far as a couple of minor ones, that only ever happened once or twice. If she asks again: “Well what would you like me to do?” you could ask to be referred for further investigations. Don’t be too disappointed if the offered referral is not to Neurology, in the first instance. These symptoms aren’t specific to a single field, and doctors tend to prefer to rule out one area at a time, rather than go off in all directions simultaneously, which just confuses things. So you could end up with a referral to, say, Endocrinology, or Rheumatology, as a first try. Hope this helps, Tina

4

Thanks for the replies. I must admit, my gut feeling was not to mention it, but then part of me thought ‘why not?’ - if only for them to (hopefully) say, “of course it isn’t MS - so you can stop worrying about that!”

The problem with my GP practice is that once tests have been done (I have been x-rayed for sarcoidosis and had the Lymes blood test) you have to ring the Reception for the results and because they have both come back clear - which I was pleased about - I have no idea how to move things on.

Anyway - points taken! I won’t mention MS and just do as I have always done, which is to explain clearly and concisely what I have experienced and try again. I definitely won’t be ‘disappointed’ if I don’t get a referal to Neurology. Perhaps I should have gone back after the chest X-ray came back clear and asked ‘what next?’

5

Hi Ivy,

It’s horrible when you don’t know whats up, and my diagnosis was (in a kinda bad/good way) a bit of a relief… From what you’ve written (and like everyone else says, I’m no medic either), I don’t recognise any of your symptoms… Maybe the thirst and weeing loads… I thought this was diabetes, but a blood test ruled that out… GP’s usually offer blood tests as routine (in my experiance) when you say things like that, so it might be worth going in for one to check it out (I’m not sure whether they would have checked this when they tested for Lymes disease)…

I think Tina’s suggestion is a good one at this stage… see if you can get referred for some other tests… If its a monthly thing there are potentially loads of things it could be… I would avoid sticking to the MS assumption coz this could block out any other possibilities if you get fixated… In my case my first symptom was optic neuritis… I had no idea that this was MS related till the doctor mentioned it.

Good luck with it all, but deffo go back to the GP, and try not to teach your granmother to suck eggs!!

Let us know how you get on xxx

6

Hi Ivy,

It’s horrible when you don’t know whats up, and my diagnosis was (in a kinda bad/good way) a bit of a relief… From what you’ve written (and like everyone else says, I’m no medic either), I don’t recognise any of your symptoms… Maybe the thirst and weeing loads… I thought this was diabetes, but a blood test ruled that out… GP’s usually offer blood tests as routine (in my experiance) when you say things like that, so it might be worth going in for one to check it out (I’m not sure whether they would have checked this when they tested for Lymes disease)…

I think Tina’s suggestion is a good one at this stage… see if you can get referred for some other tests… If its a monthly thing there are potentially loads of things it could be… I would avoid sticking to the MS assumption coz this could block out any other possibilities if you get fixated… In my case my first symptom was optic neuritis… I had no idea that this was MS related till the doctor mentioned it.

Good luck with it all, but deffo go back to the GP, and try not to teach your granmother to suck eggs!!

Let us know how you get on xxx

7

Hi Ivy,

I got away with mentioning that I thought I might have MS to my GP but possibly because I am a nurse!!! However was not the same when I 1st saw the neuro who introduced herself and then said ‘I have a letter in front of me from your GP who tells me you think you have MS’!!! Nice huh so I would still encourage caution! Xx

8

Ouch! Another gem from the Royal College of Neurology’s big book of how to put the new patient at her ease!

Alison

9

Too right Alison! Made me feel like I was completely wasting her time whilst booking an urgent MRI at the same time! When that came back with brain and c-spine lesions she was suddenly very humble!!!

X