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Undiagnosed but symptoms a plenty...

Hello strange new world, here is my story.

I woke up around 5 weeks ago with tingling in my left hand (writing and some function being hard) and reduced use of my left leg. I left it for 4 days, going to the GP eventually, to then end up in AAU, such was his concern. Having been kept in Hospital 4 days; 3 MRI’s and a CT scan later, 3lesions have been discovered on the bi lateral Pons, one of which is very new, 2 are older. I was discharged after this rest (initially considered a stroke but then decided against), and had 2 weeks getting my strength back up at home with the family. I am a stay at home Dad for a 1 and 4 year old, but was pleased to be home for half term as the other half was off and we were all together sharing the load, relaxing, even all going swimming. The week we all had to go back to work I declined, this time more wobbly on my legs and my speech becoming difficult. I was readmitted to hospital overnight to then start a 5 day steroid course which finished Monday (administered at the day unit so to not stay in) and have been stable (speech better, gait and strength changeable,) since. I am looking after the children but getting lots of help with ferrying about, but my driving is ok. Running and playing a no no as get quite dizzy and tired at times. Emotionally I am a wreck as I don’t know what is going on, one day I was fit and healthy running of an evening, next day it seems I have demyllinating nerves and brain stem damage effecting my body quite dramatically, but am currently in no pain, occasional headaches but have no symptoms around the optics.

Questions at the moment -

Why? (I know it is genetic, but triggers?) Could the stress have been a factor in the 2nd attack? They said is NOT a relapse as the first wasn’t treated.

How much better can I get and over what time period?

When will it be diagnosed?

What should I discuss with the neurologist?

I also have a sensitivity down my right side, where anything that touches me around the trunk is so tingly it is painful, it gets me in the bath with the kids toys often. I have had this around a year but never reported it (but have now).

Thank you all for your time, whatever stage you are at. Please let’s chat if you are having or had something similar, or are just friendly (which I am sure you all are).

D X

hi dom

i have no idea what triggers ms and nobody else does.

stress is bad generally. i was diagnosed in 2008 the week before my 50th birthday.

i had been under a lot of stress - work was stressful and also had a family crisis.

have you been seen by a neurologist? or are you waiting to do so?

you could get back to normal ish but might not.

you just get used to it and learn how to use your (new) body.

it’s not the end of the world, just a bit of a bummer.

enjoy your kids (and their bathtime toys!).

carole x

Hi Carole

Thank you for replying. Yes I have seen the neurologist (once) and have a pending referral to Addenbrooks (the bigger specialist nearby) who explained their current thinking, but am not sure what else to ask as am in that all too familiar Limbo I have read of here. Can you be assessed or get help/meds for day to day stuff if undiagnosed? I guess all cases are different, and the biggest unknown thing is the trigger.

I know what it is to face up to this change now, but am just getting through who I will be on the other side. I don’t want to be someone else to the family, but have been very angry and sad at this. Not that age matters I am 36, but no age is good is it? What a 50th that must have been for you? Have things settled over these years? And was it diagnosis when it settled down?

Hi D,

I’m sorry to hear about your health problems.

Very many (reasonable!) questions, but unfortunately very few firm answers.

Firstly, I think it’s absolute nonsense that your second episode can’t be a relapse, because the first one wasn’t treated!

None of my relapses have ever been treated - although, in fairness, that’s probably because most of them were before I was diagnosed. Unfortunately, that’s not the same as saying I haven’t had any - not the same at all.

It can happen that early relapses “don’t count” because they weren’t clinically verified by anyone. I was certainly in that position when I was being diagnosed. With hindsight, I could clearly recall earlier episodes, and even give a good approximation of the dates. But because I had rather recklessly or naively never been to the doctor about them, I had no objective evidence. There was no suggestion that my accounts of earlier episodes weren’t believed - I’m sure they accepted they did happen, just as I’d said. But diagnostically, patient self-reporting won’t do, even if the patient seems a good and reliable witness. There is simply no independent evidence.

But this wasn’t true in your case, because you did go to the doctor, and not only that, but you were scanned promptly, and evidence found. So they are NOT relying on your uncorroborated say-so. That was definitely a first attack - in fact, because a difference in age of the lesions was detectable, it is effectively proof of at least TWO attacks - one of which you might not have noticed, because demyelination, surprisingly, does not always cause symptoms.

But “treatment” and “evidence” are two completely separate things. If a decision was made not to offer treatment (or it was offered, but you declined), it wouldn’t follow that you didn’t really have the attack! That’s crazy logic! Treatment is a response to evidence, it isn’t THE evidence! On that basis, I don’t have MS, because I’ve never had treatment (Yeah, right…I wish!)

So something wrong here, I feel - or perhaps they just haven’t explained very well, leading to a misunderstanding? Because the other thing that would be a barrier to counting your attacks as “two” would be they weren’t far enough apart. To count as a separate relapse, any "new"episode has to be at least 30 after the last, and that means finish-to-start, not start-to-start.

So if your initial episode was only about five weeks ago, and lasted - oh, about a fortnight, shall we say - and now you’re having more of the same, you’ll see there almost certainly haven’t been 30 clear days between the two events, so they’ll be treated as part of the same. To me, that provides a much better explanation of why it can’t count as a new relapse than: “treated v. not treated”, so I’m not sure if the message has just got a bit garbled in the telling!

Actually, no, MS (if that is what it’s confirmed to be), is not “genetic” - at least, not in the way most people understand it - i.e. hereditary. There are (at least) a few dozen genes now shown to be influential in someone’s risk of getting MS, but there is no single MS gene, and even people having a large number of the known genetic risk factors do not necessarily get MS. If it was purely genetic, you’d expect identical twins - who share the same genes - always either both to have it, or neither. In fact, where one twin has it, there’s only about a 1/3 risk the other also will - so a 2/3 chance they won’t! Genes are certainly important, but can’t possibly be the whole story. There has to be at least one environmental factor, but although numerous candidates have been suggested, none has ever been proved!

There are many anecdotal reports of stress being linked to relapses, and some people believe it plays a part in the development of the disease itself. But again, there’s very little hard evidence in support of this - partly because it’s so difficult to measure. How can you tell if person A’s stress is equal to person B’s, given that we all respond to stress in different ways, and some things that are extremely stressful for one person might be water off a duck’s back to another? Stress is a very hard thing to measure under lab conditions, because it’s so subjective. So it could be relevant, BUT the jury’s out. In general, most people with MS agree that stress exacerbates existing symptoms, but it’s less clear whether it can actually induce a relapse, let alone the disease itself.

I have had extremely stressful times, including a very traumatic bereavement and related legal action, compulsory redundancy after more than 20 years, and so on. None of these apparently triggered a relapse. Other times I’ve just been chugging along, nothing out of the ordinary, and suddenly…BAM! So they’re a bit of a force of nature, and my personal belief is it’s futile to try to work out what you did or didn’t do to cause them. It’s human nature to try to look for patterns of cause and effect, but I’m not sure we influence our own MS any more than we influence the weather. Never beat yourself up for “causing” a relapse yourself - there’s no convincing evidence.

How much better can you get, and over what time period? How long is a piece of string? Prognosis for early attacks is usually good, with most people experiencing a significant recovery, and some a perfect one. Timescale is hugely variable, however, ranging from a few days to months (and there is no test that can predict). It ends up being wait-and-see.

When will you be diagnosed? When they’re satisfied you’ve had at least two distinct attacks, AND all other causes have been eliminated (there are other possible causes of demyelination, but they tend to be much rarer).

What should you discuss with the neurologist? No fixed rules - stick to what you really want to know. Obviously report any new issues or developments. You may want to ask how close you are to a diagnosis, and what the remaining uncertainty is.

You may want to raise the possibility of treatment (not steroids, but disease modifying drugs), although I’m not sure these will be on the table without a firm diagnosis - you may just want to put out some feelers, to see what the attitude is.

Tina

Thank you Tina. I can read that your journey has been challenging and stressful, and am starting to ‘grow up’ a bit from thinking ‘how unfair, why me’ and turning it around to why not me etc…I do have a very supportive family and luckily no employer to consider (but that does make covering the children’s care, my current role, a bit harder) so I appreciate these small graces (or at least I am learning to do this, quickly). I hope the employer treated you well, but it’s never a nice situation. I worked in HR a while and saw a fair bit of animosity over such situations, so I can definitely empathise with you there.

I guess it all swings on the Neurologists conversations now, the time of attacks, treatments and possible diagnosis going forward. Yes, I will focus on this with him, thank you. And today whilst I am able to walk OK and talk, I shall consider myself lucky, look into diet, exercise, all that, and stop moping. It IS a lovely sunny day after all!

X D

Dom,

Sorry - I’ve already gone on long enough, but why would you be “someone else to the family”? I suppose ALL experience changes us, for better or worse. Is any of us truly the same person we were yesterday, let alone ten years ago, 20…?

Being diagnosed with a serious illness does NOT make you a different person. Life may change a lot, or only quite subtly, in fact - there’s no way of predicting. But you won’t stop being “you”. And it doesn’t help to obsess about “the trigger”. It’s not related to anything you’ve done (or not done). NICE guidelines in fact say newly diagnosed patients should be expressly told that.

As you’re not officially diagnosed, you won’t have reached the point where you’re supposed to receive that speech, and a lot of neuros don’t seem to bother anyway.

I was only told because I asked: “We don’t know what causes this, do we?”. And he said: “No, but it’s nothing you’ve done!”

Worry is bad for the symptoms, so guilt that you somehow caused it yourself is one you can strike off the list straight away. Fate, or bad luck, or nature did it - not you. You also don’t need a life spent worrying how you can avoid it in future. The sooner you accept you’re not causing it, the less restrictive your life will be. It’s quite shocking to realise we don’t control the illness, yet at the same time, liberating. One of the very few positives about MS is it doesn’t come with a great big list of dos and don’ts about how you have to live your life in future.

“Make sure you get plenty of Vitamin D” is about the one thing experts agree on, and stopping smoking would be good, IF you’re a smoker. But everything else is suck-it-and-see. Nothing’s banned, and nothing’s compulsory.

Tina

Hi,

You probably dont have enough lesions to satisfy the MacDonald criteria for MS. You normally need more lesions and in different areas of the brain/spinal cord. They may decide to give you a lumbar puncture and if that is positive then you might get a DX. Also they may plan to rescan you in 6 months and see if there are any new lesions.

This could be just a CIS - Critical Isolated Syndrome and never develop into MS.

Moyna xxx

Thanks Moyna and Tina ( for coming back on those few points, I have addressed my melodramatic thoughts today and am getting over all that ‘becoming someone else’ stuff ). I have thought, after a little research, CIS is now a possibility. Today I heard from Cardiology that I have follow up heart rate stuff end of the month, echogram, 72 hour tape for ECG so they are hanging on to that possibility too. Worth doing I guess for piece of mind, but am going to keep on neurologists heels…

Cheers all X d X

Lots of that sounds quite familiar! I feel for you that’s a very long time to wonder and put up with this limbo. Still, may happen to me too so best be prepared for it.

Letter received today saying I have a referral to Addenbrooks MS Clinic and will talk to Neurologist on Monday. Lots to ask…