Multiple sclerosis - please help!

[purplerain37]

Evening all.

Please could I ask for those who have MS, what your first symptoms were? I know everyone is different, but just want to see it i can see any similarities in my current circumstances.

I'm currently experiencing some strange symptoms and am about to have some tests to see if it's MS or transverse myelitis. I'm really petrified. Like really really petrified.

I was diagnosed with MS in 2000, and I was terrified too. It took a while to get through the fear. I am now healthy, occasional weaknesses but I work, have kids, a good life.
My initial symptoms were tingling, numbness and pins and needles in my hands and feet, falling over, and later on, blurred vision. I have none of those symptoms today.
There are multiple, proven treatments for MS. Good luck, I know it's hard.

Thank you @HolyStyleFailBatman

I have very similar symptoms. No vision loss, but I did have that about 10 years ago and thought nothing of it at the time.

I'm glad to hear you are getting on well :)

First occurrence was loss of vision in one eye, second occurrence was "ms hug" (chest girdle). Scary AF, got diagnosis and never experienced those (or any) symptoms ever again - go figure...

Thank you for replying.

Do you mind me asking how long your vision loss lasted for please? @Chypre @HolyStyleFailBatman

My friend has MS, diagnosed 13 years ago now. Her first symptom was pins and needles on her trunk. Her second was the MS hug. She has permanent numbness in her hands now (came off of meds to have a baby and relapsed) but is not disabled and other than fatigue, is not affected as much as she feared.

she is married with 4 children and lives a very full and active life. It’s not a death sentence any more, thank god.

Mine was twenty years ago.
it smacked me quick,very sudden onset.
m
remember it’s not life limiting, it’s life changing.
get in touch with the MS Society helpline.
they are great.

be good to yourself.

I hope it’s a virus and temporary for you x

@purplerain37 5 days or so, responded to steroids via IV drip really quickly.

What is the ms hug? Is it painful?

Thank you. It's reassuring to hear that people are now managing to live relatively normal lives with ms. I have 2 young children so am so so worried about it all. And what's going to happen to my body.

It’s a spasm around your rib cage. Very painful. Feels like you’re being squeezed extremely tightly.

@Chypre thats good!

When I was 20 I had a blurred spot in one eye that lasted a few days. My gp put it down to a 'migraine' (which I never have!) and it's not happened since. I'm wondering now if this was a first sign :(

How did you all get your diagnosis? I am awaiting a head and spine MRI.

It takes a ridiculously long time to get a diagnosis.
minimum of six months.
lots of tests. MRI, lumber puncture, bloods etc.
up your vitamin D in the mean time!

Hi, first symptoms 10 years ago - I developed double vision, no other symptoms. After numerous tests (MRI, lumbar puncture, nerve conduction tests) I was told probably MS but couldn’t diagnose based on only one episode. Lasted about 6 weeks and made a full recovery. 5 years later, I had a second episode of double vision and also some pins and needles in my left arm/hand and “MS hug” - lasted about 8 weeks and again made a full recovery. I was officially diagnosed and started treatment a few months later with a disease modifying therapy. I’ve been on treatment now for almost 5 years, currently symptom free (touch wood). I was terrified at the time and still worry about relapses and disease progression, but right now I’m living a completely normal life, I work full time as a nurse and have a 1 year old daughter. There are some excellent new treatments and the future looks much more positive for those diagnosed today than 20 years ago. I hope your symptoms improve soon 😘

@JuniperAndTonic thank you for replying. So glad to hear you are also doing well and living a normal life. Long may it last!! Were lesions seen on your MRIs?

I have nerve conduction tests too but a lumbar puncture has not been mentioned yet.

You need more than one sympton over a certain period of time plus an MRI to get a diagnosis. I hsd occasional weakness in legs, with pins and needles, then optical neuritis in one eye. Cleared up with steroids. Had it over 30 years now. There is now treatments for new patients but too late for me!

Yes, I had lesions on my first MRI but they can’t diagnose from one scan, there’s a strict criteria and the lesions have to be “disseminated in space and time” ie in different places and occurred at different times. That’s why I couldn’t be diagnosed until the second episode of symptoms when my second MRI showed new lesions.

The lumbar puncture was horrible and ended up being a bit of a waste of time as it doesn’t provide evidence of lesions, it’s just a predictor for whether you may develop MS in the future - if I could go back I would probably decline it! MRI is the most important test.

If you’ve only had this one episode and they can’t find evidence of another episode, they may diagnose you with “Clinically Isolated Syndrome” which is what I was diagnosed with first. Nowadays, there are treatments available for CIS which may even stop it developing into full MS - I’d push for treatment early as the earlier you get onto an effective treatment the better!

Diagnosed in 2010.
My symptoms were numbness and pins and needles down my right arm. It got steadily worse over a number of weeks. I was diagnosed after mri. Made a good recovery after IV steroids. Had another relapse in 2014, in my eyes/vision. Literally 10 years ago this week. Another 5 days of IV steroids and recovered well.

Today I have very few symptoms. My neurologist told me he wouldn't know I have it now (by looking at me/physical exam, my mri's tell a different story) I am keeping really well.

A combo of good luck, meds that work well for me and trying oftern failing at eating/ living as healthily as I can

@purplerain37 my vision cleared after a few weeks of steroid treatment

@purplerain37 I can imagine how worried you are. This was my experience, my DS’ were 9 & 7 when this journey started.

I have MS. I was diagnosed with Transverse Myelitis and classed as Clinically Isolated Syndrome, Neurologist told me the same night, that he thought it was MS, but ran lots of tests, including blood tests, chest x ray.

The Transverse Myelitis was confirmed my head, cervical and whole spine MRI. I had two areas of inflammation in my spine and lesions found on my brain.

My symptoms were total numbness in the front of my abdomen, pins and needles, walking felt like I was walking on a spongy surface, numbness in my hands, so odd.

I then had further relapse, which was a sudden onset of Visual disturbance double vision, which lasted a whole weekend, needed my husband to help me with everything, it was awful.

Saw Neurologist again, had mri head, and a further lesion was found on my brainstem. This inflammatory attack also caused, paling to my optic disc, I was officially dx with RRMS.

And started on Rebif (injectable DMD) but caused a problem with skin irritation now I take Tecfidera (oral tablet) which still occasionally causes me flushing and sometimes a drippy nose, but other than that, I seem to tolerate it quite well. There are some new DMD’s now too.

My mobility has worsen on the past few years, I use a stick. Neurologist thinks I am now in SPMS, I was offered a new drug for secondary progressive MS, but if I was officially dx with SPMS and I failed on the drug, I would have been unable to go back on Tecfidera, as that is only licensed for RRMS.

The fatigue, cognitive function are a challenge. But honestly people who meet me have no idea, unless I decide to tell them, how you feel inside and how others see you can be exact opposite. Unless I can leave my bungalow with a smile on my face, and if I am asked how I am I always say OK, I don’t go anywhere.

you can live a good life with MS, but it’s harder and not what you would have chosen. You just have to keep positive, and if you are having a rubbish day, so what, it’s might be a better day tomorrow. I did genuinely grieve for about 6mths after I got the diagnosis, I was scared, and felt sorry for myself, it took a while to reach a point of acceptance I suppose.

Good luck OP, I hope you recover quickly.

Thank you all for sharing your experiences with me.

I've had my MRI this morning so now just need to wait a few hours for the results (I went to a&e and scans were ordered quickly).

I have been feeling tingles and pins and needles for a while, some numbness and then I suddenly lost feeling in my bladder and bowel which sent me to a&e.

Hope your MRI gives you some answers, and that you see an improvement in symptoms soon @purplerain37

@purplerain37 how are you? Have you had any results yet? I hope your symptoms are reducing.

Hello. I stayed in hospital for 4 days while they ran lots of tests, which mostly came back normal (bar a few blood tests).

Head and spine MRI was normal and nerve tests was normal, so they did not suspect MS.

There was some talk of gullain-barre syndrome as I had a stomach bug a few weeks before, but not bad enough to treat so they were happy to send me home.

I still have all the symptoms, so it's very odd. No answers other than 'maybe' a weird virus, maybe a very mild GBS. Go and see a neurologist if it does not go away in a couple of months.

@purplerain37 that sounds reassuring that MS is ruled out. I hope the symptoms settle down soon and you don’t experience any further episodes. Good luck.

@Roselilly36 thank you very much ! X