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Autoimmune disease

Ms symptoms

29 replies

r1911 · 12/02/2021 17:25

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 longing waiting list as its 8 weeks before i can even hope to have an appoitment with physio therapist and they have advised me they will phone me once an appt is available instead of me phoning to get an appt.

Thanks in advance for any help - really scared :(

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r1911 · 12/02/2021 17:46

For context my main symptoms are:
Twitching thumb
Muscle twitches
Buzzing in different parts - this has become worse on left side when moving hands/legs and radiates down left side (so worried about this)
Pins and needles when resting on legs and hands
Altered sensations on patches of skin on knee, arms and back

Im so scared its ms or something else - please help

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Stellashere · 13/02/2021 19:52

Hi @r1911 i have ms. My main symptoms were/ are numb feeling in feet and balance problems. MS is called a snowflake disease as although there can be similarities it’s effects everyone differently. Also lots of symptoms can suggest MS when they can be common in other conditions; vitamin deficiency, stress, pinched nerves etc so it can be difficult to diagnose.

I’m sorry you have such a long wait for your appointments. It’s so stressful waiting and if you’re anything like me you will be self diagnosing using google. There could be plenty of causes for those symptoms but if it is MS it really isn’t as bad as you think. It took me few years to get my head round it though! Treatment has come on massively in the past 10 years and lots of different drugs are now available. I’m not saying it’s easy, but it’s not the diagnosis that it once was. X

mynameisnotmichaelcaine · 13/02/2021 19:57

Please try not to panic. I was diagnosed last November and I was absolutely terrified and devastated, but as @Stellashere has said, treatments are so much better now than they once were.

My first symptom was optic neuritis. My other symptoms are fatigue (although not sure how much of that is being a teacher and mother of three) and occasional bladder urgency.

Nat6999 · 14/02/2021 04:33

Have you had your B12 checked? I have neurological symptoms of numbness, tingling, cramps, poor balance etc. My neurologist thought I had MS but after my scans were clear diagnosed me with B12 deficiency which can mimic MS.

r1911 · 14/02/2021 17:17

@Stellashere thank you for replying and sharing. I have def been self diagnosing and really worrying myself - i think its the not knowing thats worse than anything else. Thank you for reassuring me that its not as hard as it once was and that there are options to manage the condition 

@mynameisnotmichaelcaine thank you for replying and for sharing. Im also a teacher and just become a mum so its lovely to hear from you, have you found it okay to continue teaching/balancing things?

@Nat6999 thank you for replying and sharing. I did request blood tests but was told its best to wait until things settle with covid but who knows when that will be. Its good to know it could be other causes behind the symptoms Thanks

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mynameisnotmichaelcaine · 14/02/2021 17:38

@r1911 Yes, it's been absolutely fine so far. I've told work and they're being really supportive. I'm a bit scared of going back before my Covid vaccine, as am now classed as clinically vulnerable, but my GP practice is going great guns, so I'm hoping to be called soon.

Try not to panic. There are far worse things to be diagnosed with.

r1911 · 15/02/2021 20:53

@mynameisnotmichaelcaine thankyou - thats really good to know - i hope youre able to get the vaccine soon 🤞

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mynameisnotmichaelcaine · 15/02/2021 20:57

@r1911 I'm getting it tomorrow! I'm so relieved.

r1911 · 15/02/2021 21:37

@mynameisnotmichaelcaine thats great news! Im so pleased for you ☺️

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SophieW1967 · 27/02/2021 03:27

I have Ankylosing Spondyliti s & M S mind me asking what do you mean by ' snowflake disease' ????I thought that was a derogatory term used by right wingers ?

Stellashere · 27/02/2021 07:46

@SophieW1967 in this context it means the symptoms are different for everyone so that it is like a snowflake in that they are unique

Stellashere · 27/02/2021 07:49

How are you getting on @r1911

r1911 · 01/03/2021 11:41

@Stellashere hey, thanks for checking in.

Ive heard MS be referred to as that before for that very same reason. I think each person does experience it differently.

Ive been referred by my gp so just waiting now and hopefully it wont be long. I also paid to see a private consultant who wasnt very helpful so still in limbo and still anxiously waiting.

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MoonUnit3000 · 01/03/2021 11:45

It could honestly be lots of things... and there are a whole bunch of people (including me!) who have undiagnosed neurological disorders. In my case I have been investigated for MS a few times but still in the dark about what is causing my (very real) symptoms.

r1911 · 01/03/2021 16:58

@MoonUnit3000 thank you for replying, im sorry youre also going through symptoms, have they given you any indication of what it could be? Hope youre able to get some answers soon.

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nailsathome · 04/03/2021 09:46

I was just coming on to post the same questions as you. I'm also a teacher and a mum of 4.

I'm desperately trying to get a gp appointment but I can't. I'm getting tremors all over my body and a couple of weeks ago I lost the use of my leg for about 10mins. It was like my brain had just completely forgotten how to access that part of my body. I'm also have hot flushes - does anyone else get these?

Brooklily · 04/03/2021 11:49

I was diagnosed with MS nearly 4 years ago when I was 30. I'd had pain and pins and needles in my arms, as well as altered sensation in my fingers. The pain came in two distinct episodes which lasted a few weeks and then got better. The altered sensation was always there. I was waiting for nerve conduction tests as my GP thought maybe trapped or damaged nerves when I had an episode where my whole body went numb. I panicked and went to A+E. The nurse practitioner tried to send me home but thankfully a neuro doctor was on shift in A+E and saw me and agreed something wasn't right. I was admitted and the next day had an MRI and lumbar puncture. The day after that I received my diagnosis. I have relapsing remitting MS which explains why the symptoms were episodic. My neuro at the time said they wouldnt have been able to diagnose me without knowing that I'd had distinct episodes of symptoms. It was a few weeks before they put me on tablets and I struggled a lot with my diagnosis. However, in the years since my diagnosis I have qualified as a nurse and had a baby and scans show no progression of my MS. So even if you do have it, it is NOT the end of life as you know it!

Tempusfudgeit · 04/03/2021 11:54

I had all those symptoms and it was a severe B-vit deficiency. Treated with injections.

r1911 · 08/03/2021 18:14

@nailsathome im sorry youre also going through symptoms, did you gt in touch with your gp?

@Brooklily im so glad that a neuro was there in a&e and you were able to get a diagnosis quickly. Its so lovely to hear that youre doing so well 💗 ☺️

@Tempusfudgeit Thank you for replying. Was that diagnosed with a blood test?

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nailsathome · 09/03/2021 19:05

@r1911 I have been for a blood test today so we'll see what the results of that are.

How are you doing?

r1911 · 10/03/2021 17:01

@nailsathome 🤞 hope youre able to get some answers - im still waiting for my appt

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gailforce1 · 13/03/2021 12:45

My diagnosis was made after the following:-
Lumber puncture
MRI head and spine
Neuro tests which were similar to opticians tests but 3x as long, lots of flashing lights.
I live in the SE and went to a London hospital for the neuro and lumber puncture.
I was diagnosed 10 years ago and have had a relapse during lockdown and am now being offered medication.
Are you waiting for an appt with a neuro physio as they are the experts with MS. If not perhaps you could consider seeing one privately - your local MS group may be able to provide a list of local ones.


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r1911 · 13/03/2021 14:09

Hey @gailforce1 thank you for replying. Do you think head mri would be enough or all the other tests were needed to confirm diagnosis?
I had one a few years ago but now i think they will repeat it to look for changes.

The physio appt was a general physio one (my gp referred me for neck pain despite that not being a concern) and they discharged me and my gp has now referred me to neurology so hopefully il get seen soon 🤞

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gailforce1 · 13/03/2021 15:08

Lesions are on my spine so MRI was essential but for diagnosis I think the lumber puncture was decisive.
Hope you won't have to wait too long for your appt.

r1911 · 13/03/2021 15:36

If youre okay to share and dont mind me asking, do you only have lesions on your spine? Were the other mri tests clear?
I went for a private consultation and she suggested head and neck mri and ive previously only had head mri so im worried they might have/will miss something.

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