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Hi everyone, newbie here. My name is jenn, I’m 41 and recently diagnosed with MS. My symptoms came out of the blue, literally over night at the start of June.
My whole body from the neck down has no feeling, I struggle to walk even with a stick and the fatigue is unreal. My symptoms have never got any better from day one and about 4 weeks ago they just got a lot worse.
I received my diagnosis over the phone 5 weeks ago and I’m still yet to see an ms nurse or consultant to discuss medication. I have been doing physio twice weekly for 4 weeks and the occupational therapist is visiting me tomorrow.
My world has been turned upside down, I thought it was something that happened when you were younger.

I am so sorry hun. Who diagnosed you on the phone? I find it odd that the neurologist would not have gone through things with you at the time and to tell you over the phone is terrible. what type of MS is it etc. Obviously you have been given a team but there seems to have been a few steps missing here. hugs.

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Sorry about your symptoms and diagnosis I am less than impressed by this shabby treatment. I really hope that you get some better face to face support soon.
Mick

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I dont think its uncommon for a diagnoses over the phone at the moment, as with alot of things, its because of covid. I was diagnosed last year and i havent met my consultant or ms nurse.

The good news is you have found your way here, and there is loads of advice, empathy and support here

take care

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Hey. Sorry to hear your news. I’m 40 and was diagnosed just under two years ago. My symptoms aren’t so bad but the shock also hit me hard. Try to stay positive and message on here as and when you feel the need :slight_smile:

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My neurologist I actually wanted to talk to him on the phone simply because it was just a HOW ARE YOU as i cant get to appointments and he wanted to see ME. They can see us, there is no reason why not as at the moment all restrictions were lifted.

I have bowel problem i can only talk to a doctor on the phone its ludicrous. They should come to me and see me properly covid or not. either we are restricted or we are not.

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Hello Jenn

Welcome to the forum. So sorry you’ve had to find your way here.

Sadly, you fit right into the usual demographic for people diagnosed with MS. Being female and aged roughly 30 to 40ish is most common (although as you’ll no doubt discover, MS does whatsoever it wants to whoever whenever it wants!)

The symptoms of a relapse often take what seems like forever to recover from. At times it’s so slow you don’t actually notice that they’re gradually getting better. Then one day you suddenly realise ‘oh, I can feel my left foot again, I wonder when that happened!’

Being diagnosed by phone is the pits. We can all say ‘it’s covid, I understand they’re under pressure’, but actually that’s a cr@p excuse for giving a diagnosis of a lifetime disease. You should have had the benefit of an actual person. Someone to immediately start talking about what happens next, drug treatments, prognosis,. You should have been able just to have somebody with you. A person to ask the questions you can’t think of when given the diagnosis. And that person would have been able to act as a spare memory - forgetting what’s been said is absolutely typical when given bad news.

You should be able to at least see your MS nurse. If you don’t have an appointment lined up yet, try to get one sorted. If you have their contact number, then phone. If you don’t, then phone your neurologists secretary and ask for a) information about how to get an appointment with the neurologist, and b) the contact information for the MS nurse.

Meanwhile, the usual supposition is that you have the relapsing remitting variant of MS (even if it is taking a very long time for remission). That’s because about 85% of people do have RR at least initially. This means you should be talking about disease modifying drugs. The sooner you get started on a decent drug the better. Their intention is to reduce the number and severity of relapses.

You could start by having a read through MS Decisions aid | MS Trust This will give you an idea of what’s available. You could think about what drug might suit your lifestyle best. Think about the method of taking the drugs; tablets, self injections at home or even infusion at the hospital. It doesn’t mean you’ll have total free choice of the drug you want, but at least you’d have an idea before the medics get to discussing it with you.

Sorry, this has ended up being so long. I hope we can collectively help you. Don’t forget we’re amateurs with just our own experience to guide us. But at least we understand the feeling of new diagnosis. It’s a whole new world of scary stuff for you. Even if we can only give you fellow feeling and empathy, we’ll do our best to support you.

Sue

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Hi Jenn,

Sorry about your diagnosis and how you were told. I presume you went to hospital for MRI scan and lumber puncture tests. Otherwise how did they diagnose you? Compared to others your diagnosis has been quick - it can take years.

Hope your relapse doesn’t last long.

Must be a regional thing as I had a face to face appointment booked with my MS nurse for last week.
On the day it was torrential rain and gales. Her secretary phoned to ask if I wanted a telephone appt… Yes please.

Take care.
Jen

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My goodness, that’s a real shocker. It isn’t an unusual age to be diagnosed - I was 38 - but it is really bad luck to have a first attack as severe as that right out of the blue. You must be reeling, and I am very sorry that you are having a horrid time - that’s really tough. I hope that you start to see some improvement very soon and get on one of the disease-modifying treatments to help get things stable and keep them that way. Hang on in there.

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Thank you all for your comments and replies.
To answer a couple of questions, I had a spinal mri where lesions were found in 3 places on my spine. This was followed up by another mri. This time it was spine and head and with contrast. Due to the findings of new lesions in my spine and some on my brain I was admitted to hospital for a few days where a lumbar puncture was done. Due to not receiving any results after 6 weeks I contacted the consultants secretary and received the call with my diagnosis a few days later.
I’m currently receiving physio twice weekly and the occupational therapist has started visiting me on a weekly basis at home. I’m having a few adaptions made to the house to help me with stability and balance.
Since making this post I’ve received an appointment with the triage at the ms clinic for 1st December where I’m hoping we discuss some form of medication. I’m nearly 6 months in from my first symptoms (that I recognised) and currently I’ve not had any relief, my physio thinks I may have had a 2nd relapse before my first settled but ill see what the hospital has to say.
What questions should I be asking at my 1st appointment, obviously I have a few already but what do you wish you’d asked or what was you glad you asked in the early days?

I’d ask; A) what variant of MS the neuro thinks you have. B) what disease modifying drug the doctor thinks you should start on (I rather like Chris’s suggestion that choice of drug is a bit like comparing dishwashers! Maybe there should be reviews of various drugs?). C) also as Chris suggested, vitamin D - ask what dosage they recommend, you should also arrange to get your levels checked at your GP surgery.

It’s brilliant that you’ve already had physio and OT support. If you can, try to get as fit as possible. In particular, your ’core’. It will really make a difference in time to come.

Sue

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In a way, I had the reverse of all these patterns of diagnosis. I had my first MS attack as a delightful 30th birthday gift from a bad fairy in early 1997. My GP took my initial numb finger quite seriously (surprisingly) and referred me to a neurologist, who I saw within 2 weeks. My symptoms by this time had all moved on and he admitted me for all the usual tests. Not that I knew what the medics were looking for or what the tests meant. (I’ve learnt a few things in the almost 25 years since then!)

Following MRI, VEP and LP, in April of 1997, I was told ‘you don’t have MS, here’s a course of IV steroids, we’ll see you again in a couple of months’. I was left feeling like a medical mystery. And that feeling was increased by the follow up appointment. No diagnosis was mentioned to me at all. This was of course before Dr Google appeared. After the follow up I just thought I’d had a mystery period of severe numbness; over the next few months it got better.

I spent the next 5 years just ignoring relapse after relapse. Spasms, spasticity, optic neuritis, numbness, falling over, I just ignored the lot and pretended it wasn’t happening. (Driving with double vision is a very bad idea! I was lucky nothing ever happened to really rub that in!)

Eventually, 5 years later, I had a very nasty relapse where I struggled to walk and had a nasty case of the ‘hug’ making me stagger along doubled over in pain. By this time in 2002, I’d done a tiny bit of research, so when re-referred to another (more sympathetic) neurologist I was asked what I thought was wrong. When I said MS, the neuro said ‘yes, I think so too’.

So it proved to be. Actually, the neurologist in 1997 had also diagnosed MS. He just didn’t think it was something I needed to know. I have a discharge letter sent to my GP that makes it clear (who also didn’t think of telling me). On my NHS notes, it states clearly that I was diagnosed with MS in 1997.

So I was actually diagnosed within about 3 months of the first symptom. But not told for 5 years.

Sue

(Btw Chris, I don’t think CC would have intended any hostility, she’s actually a very kind and generous person, giving lots of time and energy to the newly diagnosed. Sometimes we just word things in a way that comes across differently to what’s meant. Not that I’m second guessing what she meant, obviously, it’s up to Crazy Chick! Just my thoughts. S)

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Hi Jenn
Like you I was diagnosed over the phone 5 weeks ago yet to see or hear from the MS nurse or Consultant. I am 50 but started at the age of 43 with very bad symptoms. I had a positive lumber puncture and spinal lesions but it has still taken 7 years for diagnosis of MS from Clinically Isolated Syndrome.
I have rung the consultants secretary today and asked to be referred to the MS nurse I think it’s a case of if you don’t do it yourself you get forgotten about.
I don’t think consultant’s should give a diagnosis over the telephone pandemic or no pandemic.
I feel totally let down and I can totally relate to you. X