Still can't get anywhere on this...

New diagnosis and before diagnosis
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So I have posted here before. But in 2022 after a very stressful colonscopy I had many symptoms of a neuro nature take hold.

Prior to that I was fine but I will say that I had a tingle in my groin for a couple of years.

For the past two years I have got the following all but tinnitus come and go.

Migraines, tingling, numbness, eyes losing focus, burning, itching, vomiting, muscle twitching, coughing, choking, pain, tiredness, mood swings, behaviour issues, unwell, unmotivated, anxious, depressed, Muscle contractions on my stomach, bowel infrequency, brain fog, random bouts of tiredness and a few more symtpoms and these came on suddenly.

I was that bad I took time off work and only got back this year but it is very hard.

Three neuros and several scans later I see it doesn’t seem to have MS lesions but here is the thing from my research. A lesionless-brain can mean MS is hiding.

My brother has an undiagnosed condition affecting his legs and causing sensory issues…

My mum had dizzy spells …

My first two neuros said it isn’t ms but viral, stres or fnd induced. I didn’t buy this.

I went to my third and he suspects something…

Now he wants a Evoked Potentials and Lumbar I am scared of these.

To be clear this affects me very bad everyday and I don’t want to be electrocuted (I thought EPs were mild testing)
Or have my spine stabbed but I don’t know what to do,

It has come on thick and fast and is destryoing me. I then read about MS and how it can be deadly and some pass in a matter of mere years.

I am 38 M and now if it is ppms I am told there is no cure and it can’t be treated very well.

How can this be, how can this happen.

I don’t know what to do, are EPs painful,I jsut get worse and worse. I am gaining weight and sleep all the time. I am no longer the man I was.

I just don’t know what to do and now I fidn it is incurable and progressive ms is a death sentence because you die from the complications and I am just so upset and confused.

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As they say in the US, you have to choose your hard. Not knowing and with little prospect of knowing is hard; having tests that might shed some light but seem scary is hard: you choose. There aren’t any easy options in this game.

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It sounds like you’ve been quite persistent in trying to get to the bottom of this… but now feel a bit as though you were on the edge of the abyss at the idea of taking these steps that could give you a clearer answer.
You seem to have somehow selected the worst possible outcomes from your online research. I admit to doing this too - I think it’s an effort to confront demons! In fact, MS varies greatly between individuals, so beware of imagining your life based on someone else’s experience. For many people, MS has little impact on their day to day life much of the time. Unsurprisingly, those people don’t spend much time on MS forums.
That said, I had a lumbar puncture and it was in no way like having my spine stabbed. It just sounds nasty. It was less pain than having your blood taken or a dental visit. I posted a fuller account on this forum (you can search for it). So don’t let that stop you. People naturally tend to post bad experiences, not good ones - I’d wanted to counter that tendency.
As for MS leading to death in a matter of mere years - I suspect that’s uncommon, especially these days. Treatment has changed a lot, even in the last 5 years.
Like you, I decided I must have PPMS at one stage, based on risk and symptoms - I was wrong.
And yes, advanced MS may be tough, if and when you get there, but MS is not a “death sentence” - most people die from MS complications. But one chap living near me with MS is in his 90s - and he didn’t benefit from all the treatment we have now.
For you though, you don’t know you have MS, yet. If you do get the diagnosis, you can get yourself onto treatment, take control of it, get help for your symptoms and get your life back.
I really hope this saga comes to a positive end for you.

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Hi RyanUK, apologies if what I say sounds a bit blunt but I think the first thing you need to do is quite definitely to find some way of calming your mind and reducing your anxiety which, to be blunt, does seem to have blown several things quite out of proportion!

Evoked potentials do NOT electrocute you. Most of the time they do exactly the opposite and aim to monitor your brains own electrical activity (which is going on all the time ). Sometimes it will involve some mild electrical stimulation but the emphasis is definitely on the Mild - you will feel very little if anything at all. Perhaps a mild tingle. So do stop getting anxious about that!

My only experience of a lumbar puncture was as a child ( for something totally unrelated to MS - some disease caught in the far east). Can’t say I enjoyed it and I understand from others it can leave you feeling a bit ‘grotty’ for a day or so but it’s nothing to worry about. I am guessing that accidentally dropping a heavy weight on your foot or hitting a finger with a hammer is far , far more painful.

MS is not a death sentence! I’ve not heard of people dying in a matter of ‘mere years’! Where did you get that from? Overall, in general, MS reduces life expectancy by ‘mere years’ - around 5 years I think. I’ve had MS for 18-19 years and at the age of 70 I am most definitely not ‘knock, knock knocking on heavens door’!

You are correct in saying that there is no cure for MS, but with treatment I’ve had and continue to live an enjoyable life and , according to yesterday’s meeting with my MS Nurse, I should expect the same for some years yet. As she said , I might well find that old age problems and decline start to catch up with me before MS does.

So, please, please find some way of calming your mind and reducing your anxiety levels. Quite coincidentally, my MS Nurse was talking about ‘hidden lesions’. It’s very, very rare , as in maybe one case in several thousand to have MS without MRI visible lesions.

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Hi RyanUK - Doctor Google really does like dredging up the worse case scenarios.

I’ve had 2 different Evoked Potentials - visual and nerve conduction; the visual ep involved having electrodes stuck on my head to monitor electrical activity in my brain whilst I looked at a screen with alternating chequerboard patterns; the nerve conduction ep involved having electrodes stuck on my ankles, wrists, head and torso - a very low current is passed through them, they start it very low and slowly turn it up until you can just feel the tingle from it, no more than that, then they measure how fast/if the signal travels to and from the brain.

The Lumbar Puncture involves lying on your side, curled up, you will feel a bit of a scratch and a feeling of pressure, you might be told to lie down for a while afterward, this can help prevent getting a headache after the LP - my LP went really well, was not painful and I did not get a headache afterwards. I was advised to make sure I was hydrated/drank plenty of water beforehand, and just to take things steady for 24 hours afterward.

I can confirm that dropping a heavy object on your foot or hitting a finger with a hammer is way more painful than EV or LP.

Its hard to not try to find out as much as possible about a potential condition - but as I said at the start Dr Google 9/10 will give you worst case scenarios and information that is frequently way out of date.

Whilst you are waiting on the EV and LP, look into mindfulness meditation to help get the racing thoughts under control; look into mental health support as well - regardless of what is causing the symptoms, they are having a detrimental affect on your mental health which needs looking after just as much as your physical self.

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Evoked potentials are generally not painful

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Hi thanks for your response. It was on this very forum someone said they had Evoked Potentials and it hurt.

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Hi Ryan, if you can find the post that said evoked potentials hurt that would be useful but I do quite seriously doubt that they do hurt. Without knowing it you have probably seen lots of them on TV medical documentaries where the subject/ patient has a few electrodes attached to their head while they receive various stimulations whether these are watching films, eating distasteful foods, or basically anything that fires up the brain and nerves including mild ( and the emphasis is definitely on the ‘mild’) electrical stimulation. Pain is definitely not needed to measure brain and CNS activity