Do I have MS?

New diagnosis and before diagnosis
1

Just wondered if anyone had any advice for me on how to deal with my current situation. I’ve been back and forth to my GP over the courses of a few years now and I just keep getting told there is nothing wrong with me, given some pills for depression/sleeping etc. and sent away.

After spending most of my life working hard I feel I have been treated very badly now by the system, having been kicked off ESA twice and sanctioned many times by the job centre. I’m very angry about the whole situation with IDS destroying the enture welfare system as many people I know were getting signed off work and bumming around while I was working and now that I come to the system and ask to be cut a bit of slack at least for a while I am treated as though I am just trying to avoid getting a job.

I worked for many years, putting up with noise and disruption to me sleep, going in to work every day tired, burning the candle at both ends. There are lots of studies coming out about the effects of noise pollution on health and how poor sleeping can permanently damage your health. I have also turned to alcohol a lot through the years to escape, usually when I have tried to get into a healthier rhythm/exercise and yet again it’s backfired and I just end up feeling like I have a hangover all the time even though I haven’t had anything to drink for days or weeks. I often feel better when I drink because it knocks me out and I sleep better.

For about the past 6 years now I have the following recurring symptoms-

  • muscle fasciculation all over my body that come and go, often staying for weeks. It can affect my eyes, mouth, fingers, toes, legs, arms, buttocks

  • black spots appearing in my mouth, bursting and producing blood, leaving scars, slightly painful

  • dull headaches / post exertional malaise

  • depression (as a result of feeling like a don’t have eny energy to go out and exercise)

  • mood swings and anger as a result of it all

  • constant tiredness and constipation as a result of the tiredness which I attribute to my metabolism slowing down because I haven’t slept enough for days

  • weight gain due to poor sleeping probably

  • occasionally heart arrhythmia / panic attacks

  • pain in my left side (probably my liver)

It’s really difficult to say whether it’s all just because of my poor sleeping over the past few year because everywhere I live there is something or somebody which disrupts my sleep every night. I rarely go through the full natural cycle and wake up feeling refreshed and I always remember my dreams because I am always wakened in the middle of them.

I don’t really understand what MS is but certainly my GP who appears to be an expert on health seems to think it isn’t MS, nor ME, nor anything else (including hypochodria).

  • It is worth noting perhaps that I have always had a sort of, I think you would call it a tick? All my life, every now and again, out of the blue for absolutely no reason I will suddenly feel a kind of shiver which causes me to involutarliy shake my head, kind of like a sneeze. It doesn’t happen very often and it’s never caused me any problems so I’ve never really bothered about it. I just thought I’d mention it though as maybe it’s an indication of something or some condition I have which is as yet undaignosed.

My lovely caring ATOS advisor advised me last time to push my GP for further investigation, but the last time I did this it was admist much huffing and puffing and oh there’s nothing wrong with you man. I was given some ridiculous questionaire to determine whether I was suffering from sleep apnea and sent to the sleep clinic, whereupon I was given some pills and sent away, twice.

I just wondered what people here thought I should do. One the one hand I would like to find out one way or another if this is th cause of these symptoms, but on the other hand I am worried that if I press them to test me and it comes back negative then it’ll be another waste of time and I’ll look even more like a hypochondriac than I already do. I don’t want to have MS, but at the same I sort of do because then that would explain everything, if that makes sense.

I’ve always found that cannabis helps, or at least I sleep better and wake up with more energy, I even put on lots of muscle and was in tip top shape a few years ago when I lived in Holland, but alas obtaining anything of the sort in the UK that is remotely therapeutic in any way is extremely difficult. Guess what, my GP doesn’t beleive in the medicinal calue of cannabis (no peer reviewed papers on it)

I have always, at least certainly in the last ten years tried to eat healthy, exercise regularly, work out, go for long walks but in recent years it’s been a constant battle between getting somewhere and then suffering a series of poor sleeps and ending up feeling worse than before, and then having to start again from the beginning.

Can anyone advise me on what to do, or if it sounds like maybe I have MS, or some form of MS?

p.s. about the username, I used this a few years ago when I was experience symptoms on another site which I suspected was maybe down to food allergies, and it turns out I have a mild intolerance to peanuts and wheat (who doesn’t these days) I am not sure how much of an effect this has or whether it’s related but certainly I try to cut wheat out my diet altogether and that usually reduces the muscle fasciculations. I have observed that when I eat a lot of bread and pastries and the likes the twicthes come on really bad after a few weeks and can take months to settle down sometimes.

2

Hello

Going by what you’ve written, it doesn’t seem like MS to me but I’m not a neurologist.

What I do think is worth asking your GP to check you for is LUPUS.

Good luck to you x

3

Why lupus?

4

I am sorry that you are having a horrible time.

I wonder what has made you think that you might have MS? The distressing problems that you describe do seem, in the main, to be the kind of problems that are very common ones indeed, at least in a mild form. My guess is that a pretty high proportion of the consultations going on in GPs’ surgeries up and down the land at this very minute will concern very similar matters. In the overwhelming majority of those cases, there won’t be anything neurologically amiss. I wonder what has made you look at your problems as a piece and think ‘MS?’ of all things? MS is a very rare illness. You will often hear that it is the commonest disease-based cause of disability in young adults. But that only makes it the most common among a list of even rarer diseases! It remains the case that MS is rare.

It does sound as though poor sleep (and fear of poor sleep) plus the mood swings and chonic anxiety and low mood (hardly surprising, given you situation) are making your life a misery. That is a bad state of affairs. In your shoes, I think I would be looking to my GP for help in sorting those things out as a priority. If a person feels properly rested and calm, it is much easier to take a clear-eyed view of other issues that need addressing.

A small point - and I am quite serious here - do you use wax ear-plugs at night? In the unlikely event that you haven’t tried them yet, please do!

Good luck with it all.

Alison

5

I mentioned Lupus as a possibility because of what you describe i.e. the black spots in your mouth. It is one of the symptoms but of course it could relate to something else. X

6

I’m just trying to get to the bottom of these symptoms I am experiencing and certainly some of them do sound like MS to me, but maybe I misunderstand what MS is hence my thread. It’s mainly the muscle fasciculations that I get sometimes, I mean everyone gets them but the frequency of which they occur, and the fact it’s been going on for years now and when I get them they seem to take ages to go away. Also the tick/shiver thing I thought may be a sign.

It all seems to die down when I cut wheat out of my diet though, as do the black spot in my mouth so I’ve always kind of though that it might be some kind of food allergy or maybe food additives. It started years ago when I was in Holland my lips were always swelling up and twitching, especially after eating, and it became quite a nuisance especially in social situation I became permanently conscious of it.

It has been discussed whether or not it’s chronic fatigue syndrome (or ME) but obtaining a diagnosis for that tends to work by eliminating everything else. But it could all just be the result of my situation, being wakened all the time. I’m fed up with it, I’m fed up complaining about it, my friends are fed up listening to me complaining about it.

And yes of course I use earplugs, have done for years and they help somewhat but the problem is they don’t really cut out low frequency noise from people thumping feet upstairs or noise vehicles etc. And yes I’ve tried talking to them, and my previous neighbours and the ones before that and as it turns out there are people who have the ability to listen, understand what you are saying and act upon it and there are people who just can’t so at the end of the day it seems as though just asking people to be a bit more quite and considerate is completely pointless. The ones with absolutely no awareness of how small things can disturb other people’s rest are the ones who never suffer these problems themselves, for some reason it doesn’t wake them. And of course earplugs are all fine and well when you are falling asleep but once you are asleep they tend to loosen and come out thus losing their efectiveness. The problem is not so much falling alseep, but staying asleep. And of crouse the anxiety of knowing that I am probably going to be wakened mid sleep again can sometimes stop me from getting to sleep in the first place. I don’t think I am a light sleeper though, it has been said many times. I sleep good, and deep given the chance, I just think I have heightened senses. I hear things that other people don’t, and I’ve also got perfect 20:20 vision. I suspect the people who seem to be immune to these problems of the modern world maybe have different hearing ranges or something. I don’t mind having dog’s ears though, greater awareness is something to be chersished but in the modern world it can also be a curse.

It comes with some releif to learn that it probably isn’t MS though, although it wouldn’t be the end of the world I guess it can be treated. Another reason why I thought it could be that is because my doctor, who is apparently an expert on them medicinal benefits of it having been taught so well by the university of pharmacology, says ME is not helped by it. But I know MS is, and that’s why I thought maybe it could be that, because I remember years ago living in Holland and after being there for only 6 months and smoking the best quality pure cannabis (no tobacco) and cycling everyday and all the sunshine I put on muscle all over. I started working out and ended up quite buff for a while, until I had to leave the place I was staying which was deadly quite and move into flats. I slept in a squat for 3 months, top of an old disused factory for nothing, not bills, everyone else was leaving because they were all getting kicked out dso it could be made into flats, I cycled every day 10 miles and back to work in the rain, came back and worked out and then smoked some hash and had the best sleeps I remember in recent years. But then over the course of several years it all went to pot, for all the reasons I’ve just talked about.

I’m hopefully going to try and get back there again, and with any luck this time it wont be another exercise in one step forward two steps back again. Only when I can find somewhere to live where I don’t have these problems all the time will I really know what the cause is? And hopefully I can fix this problem before it’s too late and my entuire life is ruined by it :frowning: It seems like the only way to escape the noise of modern life in this country is to be rich and live out on the country, I can’t see any way out of it at the moment.

7

Don’t shoot me down but maybe some cognitive behavior therapy would help you…,.google it if you’ve not heard of it. Also a better place to live, like you say when it’s possible. Talking things through with someone who is trained could really help you. I really do wish you well :slight_smile:

8

Sorry I can’t write more encouraging words. I just don’t have the energy or whatever it is anymore in me lol, to string lot’s of words together. I did read everything you wrote with interest :slight_smile:

9

Thanks, but I’m not interested in cognitive behavioural therapy. I don’t see how this will help my situation whatever the cause of these symptoms are.

10

Thanks, but I’m not interested in cognitive behavioural therapy. I don’t see how this will help my situation whatever the cause of these symptoms are.

11

More hypochondria. I am reading that some research is showing that endocannabinoid deficiency can be the underlying cause for fibromyalgia, a condition which I seem to experience a lot of the symtpoms of, according to Doctor Google anyway.

Just a thought. Not sure where I would take it because if I go to my real doctor he’ll probably laugh at me again for trying argue that I feel better when I use moderate amounts of good quality cannabis and send me away. The many different ways in which my own country and the government seem hell bent on completely wrecking my entire life.

I have experienced joint stiffness from time to time, particularly at the top of my right leg. Dizziness. Problems urinating. My eyesight is perfect 20:20 but sometimes when I get these muscle twicthes in my eye due to poor sleeping it can cause my vision to wobble, so that ties in with vision impairment. Chest pains. Last night I couldn’t sleep because the muscle in the right side of my left foot kept tensing up, and when I massaged it it started to hurt. This morning when I woke up again too early it was my left forefinger. No explanation for this apparently random and spurious selection of muscles twitching. Lately I have been experiencing more of a spasm than a twich in my right thumb, which causes me to shake my hand to get rid of the weird feeling that something was pulling on my thumb. It happened a couple of weeks ago after physical exertion. Just to add to the above…

It probably wont be that either and I’ll never get to the bottom of it and likely just spend the rest of my life feeling run down, hopefully not getting any worse or end up being prosecuted for trying to medicate naturally.

I’ll go ask some people on a fibromyalgia forum maybe.

12

Haven’t had a drink for three weeks and I still feel hungover everyday. Dull headache in the front of my head all the time, can hardly keep my eyes open some days, and today my legs ache all over and my arms. No energy, difficulty concentration. Muscle spasms have mostly gone away but still there.

It really sounds a lot to me like it could be MS.

13

Noone got any advice then? Achy legs is certainly a new development, I don’t understand why it’s happening and I’m fed up with it and want to get to the bottom of it all.

14

Hi,

I have read all you have written, and I hope I have understood it all (thinking and retaining information clearly is difficult for me these days).

It sounds as though your biggest issue is sleep? Being completely exhausted can be a vicious cycle. The tiredness during the day and then the anxiety of not being able to sleep for fear of being woken can be horrible.

I get eye twitches when I am very tired, but so does my husband and many other (non-MS) people I know. I’m afraid the eye twitches are usually just a side-effect of a lack of sleep rather than a symptom of MS. (If I am wrong - am very open to other’s opinions on this?)

As for the muscle twitches elsewhere and general discomfort, I wonder if getting several nights of good quality sleep might help you to start feeling better. It can be so hard to get to the bottom of things when you are permanently exhausted. I know how miserable it can make you feel.

Maybe return to your GP and ask for something to help you get a decent night’s sleep. Once you have the exhaustion more under control, it will be easier to see which symptoms remain and then you can return to GP with this information?

Hope this is even vaguely helpful

15

I’ll never be able to sleep properly in this house, because my neighbours are always going around in the night, always foreign and they never want to co-operate with me on the smal matter of just walking quietly, which I do for them.

The muscle twicthes are not really a problem right now, but the achy legs? I’ve neverhad that before. The muscles on my right arm are tender as well and I have joint pain in my peft wrist, which may be down to RSI from my previous job.

This all seriously can’t be just sleep deprivation because I have slept a lot over the past few weeks and haven’t been drinking, and I have tried to exercise as much as i can find the energy for.

I thought it might be fibromyalgia but I asked on some other forum and the only response I got was to warm me about talkinjg about cannabis, and then I got banned. Some research shows this condition might be the result of an endocannabinoid deficiency. Shocking but not surprising that they would ban for talking about this.

If it’s not MS then I reckon it must be ME. I have all the symptoms, it must be something. I can’t just be beause of lack of good sleep, or if it is then it’s the result of years of poor sleep and trying to work through it, and work out and then I’m not getting enough sleep for my body to recover.

There’s alot of research that shows over time poor sleeping can permanently damage your health and both ME and MS and not very well understood conditions, no-one really knows what triggers them. Strikes me that years of poor sleeping might be a contributary factor.

I’ve got the job centre hassling me to get a job, ATOS have awarded me 0 points twice, yet i don’t feel I can cope in my current situation. A medical diagnosis would put me higher up the housing list and who knows maybe if I can just get my 8 hours uninterupted every night maybe the problems will go away, but until I can get a decent place to live this is not going to happen.

16

Although exhaustion can play a large part in our physical and mental wellbeing, I am not suggesting it is the sole cause of your symptoms. I just wonder whether getting more sleep would alleviate some of your symtoms and make it easier to distinguish those that remain once you are rested?

Unfortunately, no one on this forum can tell you whether you have MS or not as none of us are medical professionals and we can only offer the best advice and support we can based on our experiences. I’m afraid asking other people in forums will only get you so far as none of us are experts and in many cases are all in the same or a similar boat to you.

I would return to the GP and insist that something isn’t right and that you know your own body. With the NHS, it is frequently left down to the individual to push for what they need. It’s not ideal, but that’s the way that it so often seems to work.

17

At least people listen to me here. I know forums are not the best place to seek medical advice, but I’m really looking for advice on what to do.

It’s been like this for several years now, every time I get new neighbours they are always nocturnal and they never listen. Arrogance is not the word. All I ask is that they walk around quietly at night, it’s not exactly asking much or difficult.

I feel a bit better today and the achy legs have sort of gone, but I’m still tired even though I had about 10 hours sleep last night. Got wakened a few times as usual, first time was as I was just falling asleep and the next thing there’s a thud above my head.

Do you think I have a reasonable case now to go back to my doctor and ask to be refered to a specialist. Last time it was such a hassle and all they did was tell me I was depressed and give me pills to sleep. What do these people get pais all this money for? They never listen to me? I tell them I like a drink and I smoke cannabis sometimes and they automatically put me down as a substance abuse case.

The only substances i have abused as alcohol and tobacco when I end up in this situation time and again and I can’t get any weed because of the dumb laws and I drink to escape. If I am already feeling hungover and don’t have any energy to go out then I might as well just get drunk. Given half a chance I don’t do this, and indeed I often feel worse when I stop drinking because the drink will help me sleep through disturbing noises.

I’ve always, at leastin the last15 years tried to eat healthy and exercise as much as possible, I used to work out a lot and was in good shape, now I am 2 stone over weight and trying to get back to where I was in 2006. My entire life has been about getting back to that level of fitness since then, most of the time with no success.

Most people don’t suffer the muscle twitches in the same way Ihave been, or these symptoms. I know something is not right, so should I go back and ask to be refered to a neurologist?

18

Correction- the achy legs are still achy, just noticed when I stood up and went to the kitchen. Been trying to get into cycling again recently- post exertional malaise?

19

I cannot answer your question, because I have no qualifications to take a view on that.

What I would say is that your thoughts do seem to be concentrated rather narrowly on the idea that you have something seriously neurologically the matter with you, but there isn’t much in what you have shared here that obviously supports this, or so it seems to me. I wonder whether it is time to have another look at what the medics have been saying to you. We are all inclined to ignore medical advice that we don’t like much (well, I am anyway), but that doesn’t mean that it isn’t sometimes worth paying careful attention to. These people are trying t help, and they know that we are not always our own best friends when it comes to medical matters.

Alison