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Please tell me straight.... what is wrong with me????

Hi all - hope everyone is doing ok. I could really do with some advice please… I’ve had a really up and down year and I am still no closer to any definitive answers. Still being told that I have ‘probable MS’. I have demyelinating lesions in the left frontal region, right trigonal region and in the cervical spine. Over the last 12 months Ive had two lots of intravenous steroids over 5 days which have really helped with the symptoms, which were mainly loss of sensation and weakness down my right hand side and shooting pains down my spine when I moved my head up and down. About two months ago I started to suffer from really cloudy vision, it was awful - like trying to look through really dirty glasses. I failed the minimum sight requirement for driving so had my licence suspended and was told that I would be seen by the eye clinic at the hospital within 7 days. Those 7 days turned into three weeks before I was seen at the hospital, by which time my sight had significantly improved. After all the tests I had for my vision I am now told that I have mild delayed P100 latencies on both sides consistent with demyelinating optic neuropathy. What does that mean??? I am due to see the neurologist again on 12th Feb and could really do with some advice please. It has got to the stage now where I want to have MS - because hopefully then I can have the DMD’s that I have read so much about. I just feel that the consultants are just leaving me to get worse before they will stop sitting on the fence and give me the treatment I need. I am only 36 and have a young family - I just want to do and take whatever I can to try and slow down or stop what is happening to me. Why won’t the doctors or consultants commit themselves to definitively tell me the truth? From your own experiences is all this consistent with MS? Do you think this is MS? Would love to hear from you - I’m at my tethers end Thank you

Hi Flossy,

An MS diagnosis is notoriously difficult, because there’s no conclusive test. However, if you were already at “probable”, and have since had further episodes (of “it”, whatever “it” is), I would have thought evidence is mounting by now, in favour of a confirmed diagnosis.

It’s difficult to comment further, without knowing exactly what is making your neurologist still hesitate. I can only assume there have been some features which are not typical, and which still leave room for doubt. One of the most common barriers to diagnosis is that the patient has only had a single episode; it doesn’t satisfy the “multiple” bit of multiple sclerosis. However, that hardly seems to be the case with you!

MS is the most common neurological disease to cause these kinds of problems - especially among young people. However, there are other, rarer things it could be, so perhaps your neuro has not yet been able to completely rule those out? MS is a diagnosis of exclusion: in other words, what you have left when all other explanations have been ruled out.

You may well be diagnosed at your forthcoming appointment. However, if you aren’t, it might be worth asking for a review of the evidence. What factors does your neuro feel “don’t fit”? If he doesn’t think it’s MS, what does he suspect instead? What additional evidence does he need?

I think neuros in general are very poor at explaining the evidential criteria that HAVE to be met, before someone can get a diagnosis of MS. This leaves a lot of people very frustrated, feeling that their neuro just “won’t” diagnose, when the reality might be that they CAN’T.

I remember thinking, very early on, that I had in fact been diagnosed, as I didn’t think MS was a topic the neuro would have raised with me, if I didn’t have it. I was surprised, then, that he seemed much more on-the-fence in his letter to my GP, so I wasn’t clear whether I’d been diagnosed or not. With hindsight, I realise I was only “probable”, but he hadn’t told me what he’d need to be sure, so I was left wondering why he refused to commit himself. It sounds as if you have been left in a similar position: some of the required evidence must be missing, or there must be some that points to something else, but you haven’t been told what.

“Probable MS” is a formal diagnosis in its own right, by the way, so it isn’t just a fob-off. Still not everyone with probable MS goes on to be diagnosed with MS, but it’s a higher conversion rate than just “Possible MS”. I think “Probable MS” is now discouraged as a diagnosis, with the preferred options being only: MS, Possible MS, or NOT MS. But clearly, a lot of neuros still differentiate between possible and probable.

With the eye test results, it sounds as if you’ve had what’s commonly called optic neuritis (inflammation of the optic nerve) which is a very common feature of MS, although not everybody gets it. But it doesn’t absolutely prove MS, as it can be caused by some other things as well.

So I’m afraid the message can only be to try to be patient, and see what’s said on the 12th. Not too long to wait now. Even a qualified person (which I’m certainly not!) couldn’t diagnose you from symptoms described over the internet. We don’t know what your neuro has seen, that we can’t, or what conclusions he has come to.

Sorry!

Tina

Great advice from Tina.

I really hope you get everything sorted out on the 12th. Maybe do a bit of preparation in advance, listing the relevant findings versus the McDonald criteria? It may not be needed, but better having it and not needing it than vice versa.

Dissemination in time: dates of attacks (noting when you had steroids).

Dissemination in space: 3 lesions (the frontal one doesn’t officially count, but the trigonal one may count as periventricular and the cervical spinal one counts as spinal so they would mean two typical MS areas which meets this criterion). Also VEPs show delayed P100 consistent with optic neuropathy - which demonstrates more than one area affected given your previous right-sided symptoms. [Demyelinating optic neuropathy means damage to the optic nerve because of demyelination. Myelin allows signals to travel quickly so when myelin is damaged, signals go slower - causing the positive peak in signal at 100ms (the P100) to be delayed.]

Re DMDs: the eligibility criteria include the line “at least two clinically significant attacks in two years”. If the neuro argues your relapses were not clinically significant, you could remind him/her that they were clinically significant enough to be given IV steroids. He/she might reconsider when reminded of that.

Good luck!

Karen x

Thank you so much Tina and Karen xx I do hope you are both ok. I’m usually so fit and healthy and I’m just finding it so hard not being in control of what’s happening to me. I know the MRI and VEP evidence can’t lie and there are clear abnormalities but I am just left feeling as if I’m being neurotic. It feels like I’m not being taken seriously and I’m just another patient number! This is my life and its effecting the ones I love and there’s nothing at all I can do about it. Having a young family is very hectic and I feel like I’m relying on everyone to run around after me - there’s nothing I can do about it and there’s no end in sight. You don’t realise how complexed the human body is til there’s something wrong with you. You’re right - 12th Feb is not that long away so I’ll just have to get a grip!! May I ask … I have been suffering this last week or so with really painful cramp in my right foot - no matter how much I try and stretch it out it just won’t go. I’ve had mild cramp before (I’m sure we all have wether we are fit and healthy or not), but this cramp in my foot is loads worse than any cramp I’ve ever had. Could this be another symptom? Is it worth mentioning? Or will my neurologist think I am being neurotic? My sleeping is very hit and miss too - but I guess that’s just the worry Thanks again for reading my post and taking time for me. It’s good to know there are people out there who can tell you things in plain English and help people’s understandings!! Melissa xx

Morning Melissa,

Yes, doing OK here thanks, after a rather poor night, with…you-guessed-it…CRAMP!

'Fraid it’s a very common symptom of MS, but yet again, not exclusive to that, so can’t prove anything. Definitely worth mentioning though, as it’s a sign something’s up with your nervous system. Then again, that won’t come as any big surprise to anyone, will it?

The cramp IS treatable, by the way - don’t go by me. I’m lazy, and have not yet got round to going to the doc to review meds that are not working out so well lately. I’m probably putting up with more cramp than I really have to, because I haven’t been motivated enough to get it sorted! But you probably need a muscle relaxant of some kind. I’ve not found anything that stops it completely, but usually, you can reduce frequency and/or severity, so it’s more like “normal” cramp, that everyone gets, as you say.

Yes, if you’ve never had anything go seriously wrong before, it does take some adjusting. I’m sure nobody thinks you’re neurotic, though. As you say, the MRI doesn’t lie - neuroticism cannot cause brain lesions. Although nobody wants to be diagnosed, we’re so lucky to have this technology! I have a feeling that without the scans, I’d still be dismissed as “anxious and depressed”. My neuro was the first person to positively confirm I’m not a psychological case; he’d found stuff they could see. I did find the whole attitude of the Medical Profession changed, from that moment - for the better. I was no longer seen as “over-anxious middle-aged woman”, but as someone who had something quite serious, without making a big fuss.

My doctor, in particular, was sorry about a previous rather abrupt episode - she’d dismissed what we now know was a relapse, but I’d feared at the time was thrombosis - unexplained pain in a leg, and with a family history of thrombosis.

The poor doctor, as soon as I was diagnosed, apologised, and admitted: “You had that THING with your leg!” I can’t blame her though. With hindsight, I think I’ve been poorly for years, but nothing was absolutely screaming MS. I’m quite a bit older than you, so I’d manage to dismiss most of it as the perils of being over 40!

Your sleep problems - you’re right that they could be mostly worry. But they could be caused by other things too. Sometimes pain, or a sensation of needing the toilet, are responsible for sleep problems, even though we’re not always conscious of them. I’d been wondering for years why you’re supposed to wake up feeling refreshed, but I was waking with a big, deep frown on my face! I now think I was probably tensing up against pain I didn’t realise I had. Strange to think you might not know you’re in pain, but when it comes on very gradually, over years, you don’t notice as much.

I hope you get some answers soon, anyway. Incidentally, it should be possible to treat some of the symptoms - like the cramps - even without a diagnosis. So if you can’t be diagnosed for whatever reason, ask if you can still get some help with the most troublesome symptoms.

Tina

x

I went back to the MS clinic on Wednesday and have now had definitive MS diagnosis. I am going to be starting DMD’s in the coming weeks once my liver and kidney function tests have come back. Neurologist was fantastic - just wish I had her from the start. She explained everything to me and couldn’t have been more helpful. I am really nervous about injecting - I’ve had two cesarean sections and two hip replacements in my lifetime yet still have a complete needle phobia. I can do daily or every other day injections just under the skin or weekly injections into the muscle. Please can any body kindly tell me about the own experiences of injecting and what I can expect. The Neurotic was quite informative on Wednesday, but it got to the point where I stopped taking things in - so much info!!! Never expected this in a million years - lots of adjustments needed. I really do need to get my head round this!!!

Hello, and sorry for butting in, I am still in the process of diagnosis having been given a ‘probable ms’ with one lesion at c5/6 and other symptoms that come and go. Am awaiting results of evoked potentials done last week. I just wanted to say that I also have trouble sleeping, lying wake for hours during the night, my gp gave me phenergan tablets. They are antihistamines and are alo given to adults for insomnia. I only have to take a half a tablet and I get a good night. You can buy them over the counter at the pharmacist, but prob best to check with your gp first anyway. With best wishes for the future, Sue x

Hi Sue - don’t worry you’re not butting in at all. Pleased to hear that u’ve managed to get something to help you sleep. A good nights sleep and rest works wonders! Good luck with your results and hope it all works out for you. The not knowing stage is the worst. I’ve been desperate for a firm diagnosis so that I could get on with things and know what was wrong with me. I still felt like I’d been punched in the face on Wednesday when I was told, but I just need to get used to it. At least I’m going to be put on the treatment I need and hopefully things will improve. Hope it all works out for you and you get the answers I’m sure you so desperately need. Good luck to you and best wishes Melissa x

hi melissa

find out about the DMDs because it will save time if you have a good idea of which one you want to try.

i’m on copaxone and although its a daily injection, its been really easy.

i use the auto inject so i dont need to handle or see the syringes

whichever you choose, moisturise your skin well because well conditioned skin make the injections easier

carole x

The best place to learn about DMDs is the msdecisions website. I’d also recommend looking on the Everyday Living forum as LISALOU has done some threads about choosing DMDs on there recently. Each DMD has pros and cons and there really is no “right” decision. Just go with the one that you think will suit you best. If it doesn’t suit, you can always switch to another one. Take your time coming to terms with the diagnosis - it’s hard, even when we are expecting it :frowning: It does get easier! Very pleased to hear you got a good neuro this time :slight_smile: Karen x