Looking For Some Advice

New diagnosis and before diagnosis
1

Hello everyone - thanks for taking the time to read this.

About two years ago I suffered an ‘episode’ where I basically suffered with blinding headaches, really bad fatigue, suspected TN and then loss of balance and my arm was constantly tensed and pulled in against my body. I was admited to hospital where they thought I had suffered a stroke and gave me a CT scan that showed a cyst on the brain. MS was mentioned by one of the doctors who originally saw me but not by the neuro that followed it up. Long story short, I recovered and nothing more was done and I was told not to worry about the cyst that it had probably been there years.

I was sent to see another neuro who sent me for an MRI because my mum had a massive bleed and they wanted to check for aneurysms. He mentioned that the cyst was in a strange place for a cyst and he would take a look at that in the new MRI.

I suffered with a few days here and there with dizzyness, on other days I would feel really tired and some days off balance but nothing lasted more than a day or so, each time I thought that if it happened again I’d see the doctor but kept putting it off.

The neuro sent a letter to me saying that there was a virchow robin in the left basal ganglia that was a normal varient and no aneurysms and he would see me again in due course.

Shortly after that the headaches came back, the fatigue and loss of balance, dizzyness and generally feeling rough came back all at once and stayed with me for seven weeks.

I went to see the doctor who said that my symptoms had become more urgent and that he wanted my follow up with the neuro expidited. I’d started looking around for answers at this point because I was becoming more and more concerned and found that I was showing signs of MS - my doctor agreed that it ‘could be’ ms but I needed to be seen by the neuro for that diagnosis.

I’m still waiting for the new appointment but I started getting better and had a month or so where I had virtually no problems apart from a few ‘wobbly days’. Yesterday I felt the onset of loss of balance, seriously tired and this time my arms feel like they are carrying ten bags of shopping each and lifting them up is hard work - I also had a few attacks of TN which is total agony, luckily they only last around 30 seconds or I wouldn’t cope with the pain.

With nothing showing up on the MRI but having had at least two seperate episodes with around two years apart do you think it could be MS or does the fact that there were no lesions rule it out?

I know that a lable doesn’t cure but at least it gives you something to work from, this not knowing is driving me insane! Sorry for the long ‘rant’, it’s just starting to get me down a bit.

Thanks :wink:

2

Hi Dolly,

I hadn’t heard of a Virchow-Robin space before, and even assumed it must be a typo (Sorry!) before I Googled and managed to find out more about it.

It seems they’re not always clinically insignificant, and can be associated with increased incidence of neurological disease - including MS.

So whilst you don’t have “classic” lesions - which does make an MS diagnosis less likely - I would have thought the “Virchow Robin” finding far from irrelevant, given your symptoms.

It’s a tricky one, because you don’t have the “smoking gun” that would point directly to MS, but you don’t have a completely normal finding, either.

In your place, I think I would want to know more about the “Virchow Robin”, and how they can be confident that it’s a harmless anatomical variant, and not associated with disease.

It’s worth bearing in mind that if the last lot were specifically looking for evidence of aneurysm, it might have been easy to rule out the “Verchow Robin” as irrelevant, because it’s clearly not an aneurysm, nor anything to do with that.

But it doesn’t follow that it’s not relevant at all, to anything.

It is technically possible to diagnose on symptom history alone, but most neuros are very reluctant to do that, because of the risk of being wrong. MS usually has some additional evidence to support it, and the longer symptoms have gone on, the less chance of everything appearing normal.

So it can hide for a while, but not indefinitely - usually!

Hopefully the neuro will have a bit more to say, but please don’t get your hopes up of being diagnosed there and then. This looks like a tough one, because the evidence isn’t clasic, and, as I say, they’re very wary of getting it wrong. Understandably so, as an MS diagnosis isn’t one to be bandied about lightly. A mistake might mean not only that you were treated for something you don’t have, but also that you missed out on proper treatment for whatever it is you DO have.

A correct diagnosis is more important than a quick one - although both correct AND quick is best of all. Not always possible, though.

Tina

3

Hi. I had an MRI in 2009 and I only found out recently that I had virchow robin in the right basal ganglia but It was thought to be insignificant.

I now have very similar symptoms to you and am off for another MRI next week. I would be interested to hear what your neuro says about it as mine didn’t even mention it!

Good luck and hope you feel better soon

xx

4

Hello Dolly! x

So sorry you are having all these problems - it certainly does get you down x

I’m undiagnosed - apart from they just diagnosed me with glaucoma in both eyes - something I’m hoping explains my vision problems - but not convinced tbh!

My brain scan showed lesions in the frontal lobe that the neuro has said are ‘unsignificant’ so I’m very much in the same position as you - symptoms fit but tests don’t!!!

What’s that saying? If it looks like a duck, swims like a duck and quacks like a duck, then it’s probably a duck??

Who knows! I just hope you get some answers soon xxxxjenxxx

5

Thank you so much for your kind replies.

I’ve tried to prepare myself for a long weight but it’s really starting to take its toll.

Thanks for the advice Tina - the neuro at the time said that he was only really looking for the aneurysms but thought that the ‘cyst’ would show up. My GP has said that it was probably never a cyst in the first place!

It’s just so frustrating having so many people all with these strange symptoms and no dx - Frustrating or not, I guess its better to get it right and get the right treatment.

I’ll be sure to come back and let you know what the neuro says.

Thanks :slight_smile: