I have multiple sclerosis AMA

[TiredmumwithMS]

Just as the title says!
I'm in my thirties and have multiple sclerosis (relapsing remitting) xx

How old were you when you were diagnosed and what symptom was it that caused you to go to the GP?

Is relapsing remitting progressive or not always?

First symptoms at 18 with loss of sensation in my legs which came back months later. This was dismissed. When I was 26, I had a relapse that looked like a stroke but when it was decided it wasn’t a stroke the doctors repeatedly told me it was anxiety and “all in my head”. I pushed a lot and eventually got a reluctant referral to neurology who diagnosed me

It usually becomes secondary progressive at some point x

do You think you’re born with it or it develops from trauma experiences?

There is lots of research into low vitamin d as a child. I have olive skin and so this may be the case with me but also had a lot of trauma growing up so I don’t know! No one else in my family has it though x

Do you do paid work?

How does it impact your life?

Yes I do but I mostly work at home due to symptoms flaring. I work full time

I’m on a chemo type drug that I have every six weeks which has calmed my MS. I go in to hospital for the day. I have a left sided weakness and have rails in the shower and front door. I can’t often join in with my children’s play which I hate. I have numbness in my hands so my husband will do chopping etc. It was important for me to carry on my job so my husband does everything in the house and has reduced his work so that he can do this. I get tired quickly, I sometimes have foot drop and will fall. I have numbness in various parts of my body.

I sometimes slur and stutter and sometimes get confused but it’s not all bleak!

Doesn’t sound easy. Hope you are ok

My DH has recently been diagnosed. They’ve said it’s ’not active’ and very little change on MRI scans since 2017-2023-2024. He’s not on medication and currently no symptoms. Was only spotted due to epilepsy, which he’s told is unrelated.
We’re seeing a specialist next week, what would ask him if you were newly diagnosed, knowing what you know now?

@redpickle
Use this tool to see if there are any treatments that he would be eligible for:
MS Trust decision aid
Be prepared to ask the specialist what the plan is for monitoring his MS.
Make sure he finds out who his MS nurse is and how to contact them.
Ask them what to do if he gets symptoms of a relapse (this can vary).

Let him know that it really isn’t that bad and even though I have symptoms I have adapted very quickly.
Sending lots of positive thoughts your way!

I’m am actually ok despite how bleak my posts sound. I have adapted ok and it has made me go for things that I would never have been brave enough to do! Thank you though x

Hi, OP, I think may have R&R MS and have been quite surprised to find very little mention of MS on Mumsnet. I did another search just now and your thread came up.

I'm in my late 50s and last summer I had strange sensations in my feet - a mixture of numbness, tingling and pain. I went to my GP who organised blood tests - they all came back normal and so she referred me to Neurology. At the time I didn't ask what she though might be the cause. I didn't realise then how long a wait it would be to see a neurologist - apparently up to 2 years in my area!

Doing my own research, I can think of various different odd symptoms I've had over the past decade or so which I've either rationalised away, got used to or forgotten about. The first one I can think of what feeling as if the floor was moving up and down when I was at an art exhibition - no one else seemed to notice and the couple of people I mentioned it to looked at me as if I was mad! I've had weird sensations on my skin - numbness or like insects crawling on my face, an inner tremor or vibration, and more recently about 6 weeks non-stop itching on my shoulders and arms. Cramping in my hands and occasional chest pains. Had chest pain again last night - woke me up and lasted about 5 mins. Think this is the MS hug - one time I went to A&E and they checked me out in cardiology - everything was normal. Incredible tiredness - when I just can't keep my eyes open, and memory can be very bad. And last month - 3 episodes of double vision.

My optician referred me to Orthoptics at my local hospital - very quickly got an appointment there - and a follow-up appointment with the consultant orthoptist in a couple of months time.

I'm hoping that the Orthoptics dept will refer me for an MRI - I saw the GP again last week, and all they seem able to do is endlessly do blood tests, which always come back normal. I'm going to be tested again for diabetes, and also for inflammation, I think she said.

How long did it take you from suspicion/symptoms to diagnosis?

I’m not going to be very positive here. I was seen at 18 with some symptoms and then diagnosed at 26. Between those times I kept going back to the GP who said it was in my head and caused by anxiety! When I had a big relapse I went back to the GP who reluctantly referred me to neurology. In that time I went to a and e twice due to the symptoms. I was seen by neurology a month later, given an MRI and diagnosed. The neurologist knew right away that I had MS but obviously needed the MRI to prove this. Can you afford to be seen privately? The waiting list for neurology is long in my area too.
Other things can mimic MS. Have you been checked for vitamin deficiencies?

Thanks for the reply, OP. Yes, I was checked for Vit D and B12 deficiency last summer - both normal. Then again a couple of months ago when I saw, not GP but nurse practitioner, after 5 weeks of constant itching on shoulders and arms. I don’t have dry skin and there was nothing showing on my skin to link to the itching. She didn’t even look at my skin but instead arranged more blood tests - I feel that they just keep taking bloods because that’s the only thing they can actually do!

I had to phone for results of those tests - both normal as I knew they would be. Surgery seemed to think that was the end of the matter and seemed surprised that I wanted to know what would happen next and wanted to see a doctor.

At most recent appointment the GP, a young woman I’ve not seen before, did suggest going privately and that they could support me in that - presumably with access to records etc. I have appt with consultant orthoptist in a couple of months and am hoping that an MRI might be possible via that route.

I'm struck by the horribly inadequate care you've had or are facing, @TiredmumwithMS and @Albless.

Can I ask if you ever talked about your eventual diagnosis with the GP who dismissed your ongoing symptoms, TiredmumwithMS?

Do you have fatigue? Can you describe the fatigue you have please