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Original poster

Ms symptoms

58 replies

r1911 · 13/02/2021 15:56

Hi everyone

I just wanted some help - if you have been diagnosed or tested for ms please can i ask what your initial symptoms were?

I have posted before and am having some worrying symptoms - i have got in touch with my gp and the route to get referred to see a neurologist is through a physio assessment (over the phone thanks to covid) so i am on a long waiting list as its 8 weeks before i can even hope to have an appoitment with physio and then they will decide if they agree on referral to neurology and they have advised me they will phone me once an appt is available instead of me phoning to get an appt so it could be months for physio and then further months for neurology appt and then ofcourse tests etc

Thanks in advance for any help - really scared :(

OP posts:
Biglumpycustard · 26/05/2021 18:47

r1911 How was your neurologist appointment,if you’ve had it already. I’ve got mine for June, nervous but hope to get some answers.

Original poster
r1911 · 26/05/2021 22:43

Hey, it was okay but not great. She is going to refer me for tests so more waiting and no answers yet, im still having lots of symptoms and she seemed to suggest a lot of my symptoms may be down to anxiety which i dont feel is the case at all.

How are you getting on? I hope your appt goes well - not long to go now

OP posts:
Biglumpycustard · 27/05/2021 10:52

Hope you get the answers you need and not be fobbed off. It’s just annoying that we have to wait even more weeks for tests. My foot is still the same nothing changes, I did see the orthotist last week and she told me that I have to mention to the neurologist that I need a muscle relaxer putting into my foot because my foot is fighting against the splint I have wear to help me walk. I just hope to get answers, I just want to know what’s wrong.

Original poster
r1911 · 27/05/2021 14:33

@Biglumpycustard thank you - i hope youre able to get some answers too - the not knowing is the worst and i can totally relate. Im sorry youre still having symptoms with your foot - hopefully theyre able to tell you whats causing it and treat it

OP posts:
Peewee94 · 15/12/2021 18:28

Hi @Biglumpycustard any update on how you got on with your testing? How are you feeling now?

Biglumpycustard · 16/12/2021 15:04

@ Peewee94 Thank you for checking up, it’s been along time I’ve been on this thread. I saw my neurologist back in June she referred me for an mri on brain and Spine which I had it August. My brain scan was fine and I have bulge disc’s, which I thought was causing my foot problems. Saw the neurologist again in November she diagnosed me with dystonia which is a neurological movement disorder but don’t know what caused it because my blood which I had done were absolutely fine too.The neurologist doesn’t think the bulged disc caused it. Dystonia can’t be cured but can be treated. I still wear a splint and I’m not on medication which improves it a little. Waiting to see a specialist to have botox in my foot. I also need physio to help me walk better as my foot doesn’t lift up, it wants to pull down. Sorry it’s a long one but that’s my update. Hopefully 2022 will be better year for me.

Starrr123 · 20/12/2021 21:25

@r1911 how are you now ? I

Starrr123 · 20/12/2021 21:25

@r1911 im going through the same :( all mris clear! They keep saying anxiety but im not sure x

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