Last reply 5 years ago
It gets easier…right?

‘Hello’…from a newbie who has been waiting in the wings and regularly reading posts. Hands up, I’m undiagnosed, but given a very noncommittal answers from my neurologists who scared the very life out of me with images of my brain with ‘abnormalities’. Whatever it is that I have, with or without a label has left my world feeling very different from five months ago. So very different I hardly recognise this new outlook and new body. Guessing that there is no right or wrong way to adapt, but it does get easier, right?

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5 years ago

You adapt, you have very little choice, but it can depend on your attitude towards it. Best wait for the dx before you really set your mind to battle it. I hope it comes soon for you.
Try not to stress too much, as that is the enemy of all of us.

5 years ago

Hi, @jitterbug, I think most of us know, or can recall, what a frustrating place “limboland” can be. You need someone to make a categoric decision, then you can move on with your life.
That’s the problem with MS, it’s the “Multiple” word!
I assume you’ve had an MRI as you’ve seen your brain, so this is a good starting point for the Neuro. They have a bewildering number of names for a first episode, e.g. Transverse Myelitis, Clinically Isolated Syndrome (CIS), Chronic Fatigue Syndrome (CFS), etc.
But, the future is never that clear, not even for us older seasoned campaigners.
So, what symptoms are bugging you and what meds have been prescribed?
Generally, a healthy lifestyle, practising moderation, a positive mental attitude, being kind to yourself and not stressing/worrying will hopefully allow your body to recover from whatever caused this episode.
It may ultimately be MS, but there again, it might not be. These bodies of ours are a wee bit complicated.
But, hang around, read posts and ask questions and we’ll do our best for you.

5 years ago

I’m undiagnosed too with transverse myelitis. I’ve been feeling exactly the same as you do for 15 months now & I can safely say I hate it!
How old are you & where are you from?
How did your situation come about?
I’m 31 female & worried just as you are x
There’s some amazing excellent people on here though & we all try & help eachother x

5 years ago

Only thing I can add is to beware of neuros who scare you like this. I had one and he did me terrible damage with his scary talk. I later found out he was known as a c..p neurologist as well so it was brilliant that my GP recommended I got a second opinion. (You can change, you know. It’s written into the NHS Charter).The guy I moved to was so different and got me thinking on the right lines (even though he was also the one who dxd me!). The moment I changed neuros was the moment I started to cope. Just my thoughts.

5 years ago

I don’t think that I was ever officially diagnosed – never had a 2nd relapse. Just slow progression over the next decade or so. The good parts were not worrying about new symptoms hitting me or having to take the DMTs. I’ve had lots of time to get used to my disabilities.

5 years ago

Thanks for your honest replies. Yep, its hard to work out if a label will or won’t help. At present it is as you put it stumbler, clinically isolated syndrome. Im a 33 year old female and my attack happened last October, when I was taken into hospital with severe virtigo, sickness and nystagmus, followed with double vision. This was later diagnosed at internuclear ophthalmoplegia. The steroids helped to speed up the recovery time for my eyes to synchronize again, but I am now left with blurry vision cutting out at points when I get fatigued….which doesn’t take much at all for that to happen. I have noticed these strange emotional outbursts, I’ve had four now which are very out of character, they go beyhond being sad to hysterical. This I believe happens if I become really stressed about something. So trying to avoid that. I’ve also noticed that I find some simple tasks difficult to achieve, for example filing some papers in date order.
As for my Neurologist, he was infact very good, I think any Neurologist would have scared me at that follow up appointment. Going to see him again next week so can ask some more questions!

5 years ago

@jitterbug, emotionally, it is a very trying time. There is a term for having heightened emotions. It’s called “emotional lability”

5 years ago

I’m trying to work out the signals of the episodes before it escalates. Thanks for the name..I just called it meltdown.

5 years ago

@jitterbug. Yes a diagnosis is necessary. For one thing, you can not assume its MS till a neurologist says so. I was in hospital and ill with tests. A YEAR later, the GP says: You got MS.
Why didn’t you tell me?
We wanted to be sure….

Also in the UK, you will not get jack in the way of benefits WITHOUT an official diagnosis. Otherwise Official deems your “making it up” “faking it”…or such b6336c2s.
So read posts, but don’t get paranoid and work yourself into a panic.

5 years ago

The thought police just vanished my previous post. Prob cuz I used a naughty word. Mebbe stumbler can rescue (and edit)?

5 years ago

So am I correct in my research that the ‘multiple’ part comes from the number of seperate attacks with a distance of time between them for a diagnosis? I just find it hard to understand when my MRI detected more than one lesion. Tricky buisness.

5 years ago

@jitterbug, the McDonald criteria can be used to determine whether to make a diagnosis of MS:-
It’s not so much a tricky business as a confusing one. The condition has no known cause and no known prognosis. In other words, no-one knows where it comes from or where it’s going!! 😕
Be patient and see if you can get on with life, as best you can. 🙂

5 years ago

Hi jitterbug and welcome to shift. In answer to your question above, the “Multiple” bit of MS is describing the fact that we have many “Sclerosis” – which are basically small scars on the pathways of your nervous system. It’s this scarring which makes it difficult for the electrical signals to get through to where they are needed to make those bits of you work as you want!

Some of us will have a relapsing form of MS, but others will never have relapses as such. They will have an initial “episode” which never goes into “remission”, their symptoms just get progressively worse over time. Some people’s MS becomes “progressive” quite quickly – others will be much, much slower – if it progresses at all. There is no hard and fast rule; one thing you will discover as you research MS is that there is NO typical prognosis or outcome.

Just realised I’ve used far too many “inverted” commas above, I can only suggest that for the full effect you imagine a 45 year old man sitting in front of you, doing little rabbit ears with his forefingers each time you encounter one. Hopefully that won’t make you want to punch me too much!

Whether you’re eventually diagnosed with MS or not, you’ve come to the right place to find out the score. See you around…

Mark 🙂

5 years ago

Thanks Mark…never enough “rabbit ears” for my liking! I guess there is no fast guarantee in life.

5 years ago 40 and went to see a Neuro a couple of years ago. Had MRI done and other tests done. Found out I had about 20 lesions on my brain. My Neuro ruled out Lupus and other things. She felt it was MS. She said my spinal tap was a weak positive, and would like me to have another one done. I feel that that is ridiculous! Regardless if it is weak, it’s still a positive. Its so frustrating that she just won’t give me that diagnosis.
Does it get easier? I don’t know if it does. But since my symptoms and visits to my Neuro I’ve always had the attitude that “it is what it is.” I don’t get down on myself or let horror stories get to me. Try to stay positive!!

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