Is it or isn't it MS....

New diagnosis and before diagnosis
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Hello.
I feel silly posting here because I don’t have a diagnosis, but I have been getting symptoms for a while and I finally found a GP who listened and understood my worries so I’m waiting for an MRI scan which is in 2 weeks. The wait is killing me (as well as these awful symptoms).

Whatever it is, I’m having a ‘flare up’ currently. Ive been absolutely exhausted the last few days and just wanting to sleep constantly day and night. My whole body aches and I can hardly pick up the kettle without feeling like I might drop it.
I’ve had really annoying floaters and blurriness in my right eye for a few months which isn’t going away. and also brain fog. My memory was always very good (I have Autism and a good memory was always my thing) but I am forgetting even important things these days.
I get tingling in my hand and foot often, which doesn’t go away for days sometimes.

Ive been to see the GP countless times about these symptoms for the past 2+ years. The one who referred me for an MRI said he wasn’t sure if he thinks it’s MS hence the MRI referral, and he thinks it’s Fibromyalgia but were just waiting to see now. He didn’t bother referring me to a neurologist because the wait time is currently 70 weeks here.

I’m 34 years old, ive got 4 kids who all have autism/ADHD. I just want these symptoms to go away now, it’s really hard to just do normal everyday things when I’m feeling like this. I know it’ll pass and next week I’ll be doubting myself again thinking I’m going mad because I’ll feel absolutely fine, it’s always the way!

Thank you for listening to my rambling. I haven’t told anyone that I think I’ve got MS because the idea of it doesn’t feel real. Until recently I thought MS was something old people got, my head of year at secondary school had it and she was in a wheelchair by the end of school and it was a sad sight to be seen. So I had a tiny bit of knowledge but this site has helped me understand a lot more.

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Hi,
You are not silly at all for posting here. The forum is also for people who are unsure and awaiting diagnosis - it’s a really difficult time.

And it sounds like you’ve been struggling with symptoms for quite a while, not knowing the cause, but trying to handle a busy life.

The problem with MS diagnosis is that the symptoms are really broad (so many things could be MS…). At the same time, the symptoms could often be something else. So it can take quite a long time to narrow down. They have to get it right because you don’t want to be on MS drugs if you don’t need them.

Your MRI may be clear, in which case I suspect they’ll say it’s not likely to be MS, whatever it is.

If your MRI shows signs that might be MS, they’ll have to refer you to a neurologist. If there are a lot of delays in your area, perhaps you could ask your GP to refer you somewhere else. You don’t have to stay local if you are willing to travel. There is something called “patient choice” on the NHS. You can check on the NHS website which neurology departments have the shortest waits. Why not pick one you’d like and ask your GP to refer you there… ?

MRI scans are passed to a radiologist to interpret, which can take a bit of time. Then the result would be sent to your GP. MS diagnosis not something GPs do, so if there are any issues, he’d need to refer you on to a neurologist.

Finally, try to get that image of your head of year out of your mind! MS treatment has changed so much since then. Also, different people have very different experiences of MS.

Some people with MS do find a wheelchair helps them get about. People tend to fixate on that a bit because it’s visible.

But lots of people with MS are not visibly disabled. People with MS on medication can go for a long time with few or no symptoms. I might have passed you today when I went out for my run - you wouldn’t know I had MS. Medication can often keep MS under control, so if - if - you do have MS, the sooner you know about it, the sooner you can act.

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Hi, I haven’t even spoken to my gp - but am worried too.
My gp is sick of me. I went because I have a new rash on my face, months ago. It’s the size of tablespoon,on my cheek, red, hot, comes and goes.
He said it’s nothing.
I started getting pins and needles in my soles, palms, then legs, face, lips.
And weeing an awful lot, especially at night.
He said that was diabetes or just bad luck.
Urine and blood tests all good enough.
But I’ve started stumbling and feeling dizzy, nearly falling over.
I’m tired.
My question is, is there anyone I can talk to without contacting my gp? I’m embarrassed to go again. Of course, it may not be ms … i just want to know. And if not, what is it?
I’m terribly tired, too.
Is there anyone I can see?

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Wow, that doesn’t sound like a great GP.

Can you ask to see someone else at the practice? The GP’s job is to continue investigating until they work out that the problem is, if at all possible… your symptoms sound like they could be quite a few things apart from MS (you mentioned diabetes - could you get the bloods checked again?). If you do have diabetes.. what sort of diabetes? what is the treatment plan?

If your GP practice is that useless, you could move to another local practice.
You could also see a GP privately. That costs money. Superdrug provide an online appointment service which is relatively cheap, but it’s probably going to be more useful to see someone in person who can actually examine you and refer if necessary…