So I posted a while back, but have tried to refrain from spending too much time on here and just winding myself up over what may or may not be something to worry about. Just before Xmas I had an ‘episode’. I was referred to the local TIA clinic for an assessment, which included brain MRI. Scan came back clear for stroke /TIA, but a week later I got a call back from the stroke neuro and was told upon closer review by the radiologist, they had found 2 lesions (frontal lobe and corpus callosum) which could indicate demyelination and require further investigation. I was referred on to an MS specialist neuro and my appointment is on Monday coming up. It’s been about 13 weeks since I was hit by the bomb shell and my emotions have been all over the place ever since. And I just don’t know what to expect on Monday. I doubt a diagnosis on the spot is likely as have only had the one MRI and only what could be considered mild symptoms, if symptoms at all. I think I’m expecting to be referred for more tests, but mostly worried I’ll be told to ‘wait and see’…and then I’ll remain in limbo for gosh knows how long…it’s not like I want a diagnosis, but I’d just like some answers. A straight yes or no, I can cope with, it’s the not being sure and worrying that something could be wrong that is driving me mad. It seems most people end up having various symptoms and then after loads of GP visits finally get a neuro referral and maybe an MRI. My lesions have almost been discovered by accident - has this happened to anyone else? What are the chances of an MS diagnosis without major symptoms?
at your appointment the neuro will look at your past history and ask about how you feel.
they may want to run more tests like visually evoked potential and maybe a lumbar puncture.
basically you have to wait loads during the diagnosis process.
so be a patient patient!
some people get a diagnosis without major symptoms.
Multiple Sclerosis is difficult to diagnose as symptoms are so varied and can resemble other diseases. It is often diagnosed by a process of exclusion – that is, by ruling out other neurological diseases – so the diagnosis of MS may take months or years. As you don’t seem to be affected by any symptoms at the moment, it would be sensible to put it at the back of your mind and carry on living life to the full. Some people think of MS as being a Sword of Damocles hanging over them. This is no way to live, even if one does have a diagnosis of MS. Don’t worry; be happy. Best wishes, Anthony
Both of these responses are right. You could be given a CIS diagnosis, based on your one episode and MRI result, told to wait and see if there’s any repetition of symptoms. If that happens, then try your damnedest to put it all out of your mind. Obviously it’s impossible to entirely forget, but if 5 years go by and you have no resumption of symptoms, then you could write the whole few months of worry off.
Or you could be given a neurological examination on Monday which makes the neurologist decide that further investigation is warranted, ie Evoked Potentials test and/or Lumbar Puncture. And these tests could just drag out the eventual diagnosis of CIS and a ‘wait and see’ attitude. Or they could give an eventual diagnosis of CIS and a ‘let’s think about disease modifying drugs just in case’ result.
Either way, I doubt very much that you’d get a diagnosis of MS on Monday. It’s possible after neuro exam and tests, but even then, having had just one occurrence of neurological symptoms, I suspect a CIS diagnosis is more likely.
Whatever happens, you basically can’t affect. All you can do is take with you on Monday some details of what happened, how long symptoms lasted, whether there has been any residual issues and see what the neurologist says.
And if the limbo phase continues, then as Anthony says, try not to live as though you ‘might have MS’.
Best of luck for Monday, come back and tell us what happens.
Thanks Carole. The stroke neuro suggested vep and lp would be likely, but suppose I’ll find out on Monday.
Its hard to be patient when you’re told something could be wrong…I found the first month or so after being told about the lesions quite hard. Overthinking everything and imagining the worse.
Ive managed to put it to the back of my mind tho but now with my appt coming up its hard to ignore the possibilities…
Thanks Anthony. I like your optimism
Hi there, well you’ve had fab advice from our experienced MS people here. Of course you are bound to worry but you are sensible enough to know that worry does nothing to help.
I’d like to try to reassure you that we have all been where you are, but perhaps without a ‘one off episode’. You’re now in a similar position as my daughter, H, which is wait & see. It’s a limbo land that could result in totally ruling out M.S. H & I jumped to conclusions that she’s inherited a faulty gene from me. She had mri’s, L.P. & 2nd mri with contrast. The eminent Neurologist confirmed he cannot see any link towards MS. He hasn’t discharged H yet but will monitor her annual reviews & tests just because I have ppms.
An analogy: Have you ever asked people what a holiday destination is like? 18 ppl highly recommend it, 1 person tells you a list of negative horrors. The only statement you think of is the 1 bad one.
In your case, someone mentions ms and you begin to worry about what if’s. This is understandable, but try to look for good news and live your life building memories.
As others have said, it’s a long journey of doubt to have a diagnosis of MS, though for you, it may not be MS at all.
Best wishes for Monday.
So a little update - I finally saw the neuro this morning and it was about as expected. No diagnosis but also not in the clear. My two lesions are suspicious of MS due to location, but symptoms have been nominal and mild, so I’ve been given a ‘wait and see’ with a repeat MRI in 6 months. I’m happy enough with this and just hopeful nothing progresses, but there will always be that little niggle at the back of my mind wondering if / when things might get worse. But for now, to the back of my mind this goes and fingers crossed! Thanks for the support in the meantime!
The positive is that at least you are been monitored.Has the neuro given you a phone number to call if you get any new symptoms before your next mri? I waited the six months and then told him. He told me I should have phoned - but it was all so new to me I wasn’t sure. The symptom wasn’t effecting my day to day life as such - just annoying, a mild dizzy sensation. Anyhow, when I saw him he reckoned it wasn’t an ms symptom.
Yea, I’ve been told to contact him if I have any new symptom(s) which lasts more than 24hrs or other general concerns. I’d be worried about phoning up unless I felt the symptom was having a real impact on my day to day, just because I don’t want to be constantly worried that every strange sensation is ‘something’. I didn’t even tell him half the issues I’ve had over the past yr, bc I got the impression it wouldn’t have changed the decision to ‘wait and see’. I’ll keep a diary and see how I get on…
im a bit worried about the scan actually being booked in. He said he’d send me a copy of the letter to my GP and appt for MRI to follow, but since it’s so far in advance I dint know whether to expect a date through in the next few weeks, or whether I’m likely to wait 4-5 months before getting a date. Do you know how this usually works?
have you had your repeat MRI yet? And results? Hope all ok!
So, more or less as expected. And as you were expecting that, it’s a good thing.
With regard to your MRI appointment, it very much depends on the hospital. I was suddenly sent an MRI appointment recently, which apparently had been arranged a year ago by my neurologist.
If 3 months go by and you’ve not heard, phone either the appointments team or the MRI department of your hospital to ask what you should expect.
Meanwhile, hopefully nothing untoward will occur over the next few months (or years!).
Thanks Sue for the reply. Yes, outcome of appt was as expected. Would’ve been nice if I’d been told my lesions were not suggestive of MS or anything problematic, but for the time being I feel relatively ok and I know I’m being monitored so if things do flare up I can hopefully be seen quickly enough. Lets hope that’s not the case though! A few healthy months and or years would be nice. On top of all this malarkey I’ve had 2 chest infections in the past 4 months. 3 in the past yr or so. I think I’ve just about shaken it this time though, so fingers crossed I can remain ‘healthy’ for at least a little while Perhaps I’ll make a note in my diary for 3 months time to chase about the MRI in case nothing comes through before then. Looks like I’ll be hanging around the forum a little bit longer…! Appreciate the support you get here, it’s amazing to be able to open up and hear from people who have been through it all/are going through it!!
Yes had my repeat scan December 17. Good news no new lesions since feb 17. I have a spine one end of March. Thank you for asking. No news on dmd and I’m querying that one as I fitted the criteria in sept 17. We tend to get letters here about 3 weeks before mri appointments dates. If I know when he has asked for the scan, ie in a year or 6 months, I phone the mri outpatients about 6 - 8 weeks before because they know when it’s booked in before the letters go out, letters seem to take ten days to arrive?? that way I know the date earlier so I can keep dates frees for meetings if possible and at least I know I’m in the system either if I don’t know a date. Honestly if I didn’t do this I would have missed one before as the letter disappeared.
I agree this forum is invaluable, you learn more through it and people understand. I know I’m only early days in my journey but I try and pass on what I’ve learnt to date. I just repaying all the advice I had, if I hadn’t come on here I wouldn’t have been as prepared as I was for my lumber puncture. I wish I started posing earlier. We all need as much help as we can I think on this journey.