Frustrated and feel like I'm in limbo!! arghh

Hi guys… I joined the forum a week or so ago for some info and support. So far so good!! But, I am feeling really frustrated at the minute.

This time last month I was in Australia, in hospital. I was treated with a course of steroids and my symptons improved gradually. However, thats when the bombshell of MS was dropped on me and I was told it was probable. My discharge summary states MS on it and reading through my MRI notes I have multiple white matter lesions and one active lesion suggestive of MS. The mention of MS was a huge shock to me, especially being away from home so I took the decision to fly back for some support from my family. Yesterday I had an appointment with the neuro and he told me that I wasn’t high risk and he was really reluctant to suggest MS. I can’t however, stop thinking about MS as the doctors in oz told me that it was probable so this huge bombshell was dropped on me now I get home and I’m told not to think of MS!?. The neuro yday said as my symptons have improved so well that it is entirely up to myself whether or not to have another MRI in 3 months, but he was happy to let me go back to Australia etc. I’m still waiting on CSF oligoclonal bands results- I don’t know if they will even prove anything!? and I am EBV positive which doesnt seem to have any signifance to the neuros either!?

Sorry to ramble on guys, your prob all half asleep by now! I just feel in total limbo right now as If I would of seen this neuro in Australia I more than likely would still be there. I should probably just accept what the neuro told me yday and be happy that I recovered so well from that first ‘attack’ but I’m just so angry as I’ve been told the worse by the docs in hospital and then another thing by the doctors here! :frowning:

That must be so frustrating for you! It amazes me still the number of docs who seem to have no clue how these things actually make people feel. How can not think about ms when you’ve been told by another medical professional that it probably is?! It’s like being caught between two parents who don’t like or respect each other (‘oh take no notice of your mother/father s/he doesn’t know what s/he’s talking about’). Grrrr I’m frustrated for you! Sorry for the rant with no helpful advice! At least you are feeling better physically. D’you think you might go back to Aus? What were you doing over there? Gx

Hey Sunflower, thank you for your reply. Yes, it is so frustrating and MS is constantly on my mind:(

The nero basically said that he was a ‘glass is half full’ kind of neurologist and I do see where he is coming from, I mean I could go for years and not have another attack as such, but I can’t stop thinking about it! He did say we cant rule out MS altogether, I mean I am totally lost and dont know where to turn. My mum said it was heartening his opinions, yes for her, but for the past month I have been trying to deal with the fact that I probably have MS and trying to take it all in. To then come home and have it kind of brushed off and told not to worry about it. This stuff seriously f#*ks up your emotions(sorry excuse my french!)

I dont know whether to have another MRI in aug/sept time. If I do and it shows up further demyelanation I am going to be thinking the worse, but if I dont have the scan is it constantly going to be playing on my mind. Or do I just wait and sit this out and hopefully I dont have another attack. Neuro was happy for me to go back to Aus and then see him when I come back which will prob be April 2014. I am hoping to go back in Sept all being well. I was on a working holiday visa living and working in Sydney! Having a ball until I got ill and spent 10days in hospital and then came home :frowning:

Ash x

I know what you mean. I was only diagnosed a few weeks ago but neuro thinks I’ve had it at least 5 years. I’m already wary of doing things I wouldn’t have thought twice about a few months ago. For example I won’t go on holiday abroad with my kids this summer (I’m single parent) in case something happens yet I went last summer and everything was fine! I know I’ll have to stop thinking the worst and just live that ‘glass half full’ life but finding it really difficult at the minute. I think in your shoes I’d really struggle to know what to do as well but would probably end up plumping for the MRIs in aug/sep otherwise I’d be over anxious about every twinge, buzz and dizzy spell x

I’m sure holidaying abroad with kids as a single parent is stressful at the best of times lol… I know what you mean though, there is always that what if thought at the back of your mind.

I’m finding it really difficult aswell, I am really angry and I wish they had never bloody mentioned MS to me in the first place! I asked the neuro yday about the oligoclonal bands pending and he said even if they are positive(frm the LP) it doesnt necessarily mean MS, yet I have been researching ALOT and Oligoclonal Bands are the product of inflammatory activity by the immune system. In MS this kind of activity is present in the vast majority of people with MS. I guess its just a waiting game now and yes I probably will have the follow up MRI in aug/sept time, Im anxious enough!

Ash x

Hi Ash, if there was no available treatment then I would go on and try and ignore etc and wouldnt want a label. But as there is very good treatment to stop relapses and reduce overal disability I would want the treatment. My advice would be that if your LP is positive for O bands then have another scan. If it is negative then dont as MS would be very unlikely.

Take Care

Moyna x

Hi Ash

I had a similar experience although I wasn’t so far from home so didn’t feel quite so isolated.

This was back in 2008 and I was admitted to hospital after presenting myself at A&E with slurred speech and an inability to write properly. My GP had tried to get me an urgent brain scan but the hospital had sent me an appointment to see a neuro for over a month later which was obviously no help! Anyway, after 5 days in hospital I had the brain MRI and the LP which showed lesions and the O bands. A ward doctor told me I had MS. No explanation. He wondered why I burst into tears!!

The following day a neuro came to see me and said the ward doctor had jumped the gun and it was only MS if I had any further symptoms at a later date. He said I could be fine for another 6 months, a year, 5 years or I could never get any further symptoms and there was something like a 25% chance of that. With my luck I didn’t like those odds. A month later I had a further outpatient appointment by which time I had made a full recovery without steroids and was told to go away and forget about it. However, like you say, that is an impossibility once the idea is in your head.

There isn’t really much you can do about this. I did my best to keep busy but every time I had a bit of dizziness or blurred vision I got really frightened and anxious. At least you have been offered a follow up MRI. I wasn’t even offered that.

For me, the situation resolved itself just 3 months later. I had been told to carry on with life as normal so despite feeling extreme fatigue I did just that. As a single mum to a 15 yr old son I went back to work and rushing around at home as we do. I ended up back in hospital on IV steroids as I was numb from the waist down and was barely able to walk. At least the diagnosis didn’t come as a shock as I was prepared for it this time.

Btw - IF you do have MS you will learn to live with it. I still work 30 hours pw, I still drive, still have an active social life, still take holidays with my son (just make sure you have insurance to cover for pre-existing conditions), etc. Sometimes I have to make a few contingency plans before I make arrangements but most things are still possible. Life does go on and if anything, it makes me enjoy life that bit more. For instance, I will never take walking (or talking) for granted ever again. Live life to the full every day :slight_smile:

If I were you I would go back to Australia (with some contingency plans in place) and have one heck of a time!!

Tracey xx

Thanks for the replies guys :slight_smile: I’m just going to wait for the Oligoclonal bands results and then yes if they are Positive I will have the second MRI. I just shake the thought of MS out of my head, I’m so anxious all of the time. Any little ache or pain and I’m panicking :frowning: I went out on wed night for a meal and after a few glasses of wine I lost my balance and went over on my ankle bad and cut my jeans and knee, maybe I am just over thinking it all but I can help relate everything. I’m just going to try and put it to the back of my head until I get my OB results from oz and take it from there :slight_smile: Ash x