Newly diagnosed - scared and bewildered

New diagnosis and before diagnosis
1

Hey everyone,

Looks like I’ve ended up here after all! Since summer 2015, I have been repeatedly visiting multiple GPs, eye specialists and neurologists insisting that I have MS. The general consensus was that I definitely didn’t have MS, rather it was some sort of pinched nerve type thing and/or anxiety. I was absolutely insistent on getting an MRI scan, so they reluctantly gave me one. I got the news two days ago over the phone that I have inflammation on my brain and c-spine which ties in with my symptoms. The doctor has pretty much flat out told me that it’s MS, and it’ll be confirmed with a lumbar puncture in around 6 weeks.

Above all, I’m honestly just baffled that this has happened to me. I’m a 24 year old woman, in the prime of my life and happiness. I can barely sit still, I’m doing my Master’s degree and I try to cram in as many trips to the gym per week as possible. My symptoms have solely been twitching, tingling hands and feet, and a positive L’Hermittes sign (electric shocks up my body and down my arm when I bend my head forward). Despite being insistent that I might have MS…at the same time, part of me thought that it was a ridiculous notion and my tests would come back clear.

So what on earth is in store for me now? I don’t even know what kind of MS I have. Is it likely that I’m going to become tired, with visual disturbances and chronic pain? I know that everyone’s MS is different, but is there a similar pattern of events that tends to happen? And is there anything I can do to keep things as they are? I’m freaking out - I feel like I’m on borrowed time. I’ve also been given no follow up support by my doctor, so all my research has been done online.

I suppose I really want people to come forward and reassure me that this isn’t the end of the line. I have so many things to do and achieve and I didn’t ever see a debilitating, chronic illness as part of my future (I don’t suppose anyone does).

I’m also sorry for any negative vibes I might be putting across - I’m very happy to have found this society. Things are just still very raw and surreal at the moment.

2

Hello l .Rich and Carly.

I really hope you two aren’t miffed at me replying to you both at the same time.

Your posts have many similarities and I wanted to reply as fully as possible to both of you. It does take time, energy any thinking when offering in depth advice, so I thought I’d do it this way . Again I hope that’s ok with you.

OK, where do we start?

I’m a 64 year old grandma, who initially began tripping up over fresh air… Literally! This began when I was 45…I’d just got promotion at work, a job I adored, had passed my driving test and got my own brand new car, had lost 7 stones with WW and was running 3 classes a week, as well as my day job!!! And I’d had a boob job!

My teenage girls, hubby, dog and home life were all super! Life didn’t get much better than this I thought!

So, when things began to change, I was terrified…Just as you two are now.

I presented clinically as typically PPMS. But 4 MRIs, 2 LPs, 2 EMGs, a VEP, plus gallons of blood tests proved absolutely zilch!

I stopped work as I couldn’t stay upright and awake for long. I was given a 95% diagnosis of PPMS. A few years later, my diagnosis changed to Hereditary Spastic Paraplegia. My world flipped again!

I got physiotherapists , OTs, GPs, continence service etc on the case. They were all absolutely fantastic.

OK now, back to you…

You at the most frightening time of your lives. You are bound to be…It is chuffin scary.

But please let me reassure you that as long as you have a good network of support and pace your activities, look after yourselves the best way you can, there is still a good life to be lived with MS.

Of course everyone’s path will be different. Some medications will help where others may not.

Take time to allow all this to sink in. Never beat yourselves up for admitting to having a bad spell.

Don’t Iisten to anything your second cousin’s father in law may or may not of had! People can seem empathetic, and get it wrong.

You may need to change your future expectations, then maybe you won’t. No-one can predict your futures, not even us!

So my lovelies, I’ll shut up now and hope some of what I’ve said helps.

Love pollsx

3

hi i.rich

give yourself time to absorb this news.

learn mindfulness meditation as this can see you through any bad patches.

carry on with your life.

you are still fit and able, your body will tell you when it is time to slow down.

good luck

carole x

4

Hi Boudica,

Thank you so much for your reply - of course I don’t mind the joint reply, I read Carly’s thread and I do think we’re in the same mindset at the moment.

It is amazing how differently MS can present and the difficulties it can take to diagnose…compared to you, my MRI was right on the money, and I’ve had a comparatively minor experience so far! Like you, it seems to have hit me whilst things were going well. I recently lost my mum to cancer and I was thinking, “at least I’m on track with my studies, healthy, and have a wonderful home with my partner”. So I brought in the New Year with such optimism, that this year would be one of strength and moving on. Then I’m hit with MS! It certainly does feel unfair.

You’re right about everyone suddenly being experts on MS, my dad tells me about people he knows with MS who are absolutely fine, but it’s starting to become clear that no two people are the same. I just hope that I can one of the many who don’t have to rely on a wheelchair (I mean no offence if you do use a wheelchair).

I will certainly try my best to listen to what my body is doing and what it needs. My partner is helping me with dietary changes, as we’re going to get rid of the junk together and cook more from scratch. I’m glad I have her as my main support - she’s very upbeat about the whole thing and I think that’s what I need right now.

Honestly, thank you for your kind words. I’m planning on spending a lot of time here and finding out as much as I can from the people who are affected by MS. It’s proving to be more useful than simply Googling MS.

Take care, and all the best! x

5

Hi

Im so sorry for what you are going through. I too was sometimes dismissed as imagining symptoms. Until, that is, the MRI results came back yesterday. And the doctor just told me and didnt offer any help or support.

I cant answer any of your questions, as they are the same questions on my mind. But I do know that the human spirit can be f***** resilient. All I can say for now, is please look after yourself and get what ever help you feel u need.

I see that you are doing your MA. I have a phd that Im meant to finish but not sure what will happen now. Maybe getting back to the MA at some stage will help provide hope for the future. Please remember that the uni have a duty to make reasonable adjustments in relation to your course, which might entail for example giving you more time to complete assignments. Funny thing is that my phd concerns reasonable adjustments in the workplace, though I didnt have a disability when I started. A collaegue of mine recently published an article about reasonable adjustments for disabled students (and MS would definately count as a disability). Let me know if you want me to send u a copy, as it might contain some usefiul ideas.

Anyway, take care

Rupert

6

Hi

Obviously you’ve had absolute pearls of wisdom from Poll, Carole and Rupert.

To add my twopennorth, most people are initially diagnosed with relapsing remitting MS so hopefully yours will be too. I would expect that to be the case if your symptoms have come and gone, even if it’s taken months for symptoms to remit, and also even if they haven’t completely cleared up. The good news there is that there are loads of disease modifying drugs and your neurologist should get you started on one asap. This could ward off future relapses and you may find that any disease or disability progression is very slow and/or nonexistent.

Regardless of the type of MS you are diagnosed with, my one piece of advise, that you are indeed already following is to get and stay as fit as you possibly can. Honestly, keeping a good set of muscles will be the best thing for you regardless of what MS throws at you in the future, in particular, build up your core.

I didn’t. I was never a particularly fit person and yet I managed to stay more or less disability free for 10 - 12 years. It was only after 15 years that I became disabled. And I’ve been unlucky in that I’ve never had a DMD that either worked or didn’t give me impossible to live with side effects.

So, my message is get fit, stay fit, eat well, take appropriate vitamins and minerals (high dose Vitamin D is a must plus Calcium and Magnesium help the Vit D to be absorbed), and get on a good DMD.

You are unlucky to get MS so young, but have every chance to have it not totally derail your life.

Sue

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you`re very welcome hun.

I`m glad my reply helped.

luv Pollsx

8

Hello,

You want someone to come forward and reassure you that this isn’t the end of the line?

This is not the end of the line.

This isn’t even the beginning of the line. You’re on Station Approach and the train hasn’t arrived at the platform yet. You don’t even know what time the train is due.

So, keep your head down with the studies; you’re going to need that MSc one day. Keep going to the gym, it won’t do you any harm and neither will a sensible diet.

The most important weapon in your arsenal is that you have a caring and supportive partner. You’re young, you’re going places. Worry about the end of the line some other day.

I’m 62, had PPMS for 10 years and I’m nowhere near the end of my line.

John

9

Hi Rupert,

Thank you so much for your reply - it sounds like we have a lot in common indeed. My neurologist has just delivered me the news and scarpered off, without passing me on to any sort of aftercare. I suppose you were also like me, having friends and family repeatedly tell you its a “pinched nerve” or “anxiety”, and trying so hard to believe them but at the back of your mind there was always the “what if”…I absolutely hate when the “what if” becomes your reality. I’m sorry you were made to feel that way after your MRI too, it’s definitely one of the most frightening feelings.

I’m also sorry to hear that your PhD has been put on the back burner, is this because of physical problems, or because the news about MS has affected your mental health? (If that’s not too much information to share, I fully understand if it is). Ironically, my Masters is actually an MRes (Masters of research), and it’s in biomedical science, so my Masters thesis is about brain pathology and I’ve had countless lectures about the molecular mechanisms of MS! I would love to get on and do a PhD in stroke research, and having applied to many, I know how hard it is to be accepted onto a PhD so I commend how much work you must have put in. I truly hope you’re able to continue on with it, but even if not, please know that even to get that far is a massive achievement.

I really am wondering about the adjustments uni might be able to make. The thing is, I really don’t have any physical problems that would affect my studies (yet…). The only thing that might be wrong is that I can barely string a sentence together these days so I’m dreading presentations. It’s difficult to prize apart what is MS and what is anxiety though. At what point does it become a ‘disability’? I would definitely be interested in reading your friends article, as it’s something I need to read up on.

Thanks again for your message, all the best.

10

Hello! Thanks for your reply, it’s been really informative. I’ve actually been worrying about whether I have RRMS since my symptoms were absent for only a fraction of the time they’ve been present, and because there might possibly have been some residual tingling that I just hadn’t noticed after getting the “all clear” at the GP after my first complaint about my symptoms in 2015. I do definitely think there was a small gap, at least. I haven’t even began to digest the possibility of having PPMS or SPMS. In the case of it being either of the progressive types, is the prognosis still the same in that you don’t really know how it’ll affect you and you still have a fighting chance of a normal life? Or is it only RRMS that can be successfully tackled by DMDs?

Thanks for your encouragement :slight_smile: I really do like exercising, which is lucky. I’ve heard that it’s a good idea to work out and eat well while you can, to sort of “pay it forward” for a point where your body needs something to rely on. Perhaps I’m expecting too much, or romanticising the idea of stopping something which can’t be stopped. You’re right though, it can’t hurt.

I’m sorry that you weren’t able to get a DMD that suited you, and that stuff is a bit more difficult now. I’m passing on lots of well wishes to you, and I will certainly heed your advice. x

11

Thanks John! That was a very welcome positive message. I do have a lot of things on my side - a chance to start treatment early, a good support network and an otherwise bright future. One thing i am very bad at is accepting things which are out of my control, and ignoring anxious thoughts. I will definitely try though! Take care :slight_smile:

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Hi Carole, many thanks for your message. I am very interested in Mindfulness - I’ve been thinking of purchasing a good mindfulness book to get me started. Do you have any suggestions? :slight_smile:

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Hi again

Thanks for your reply. It made me feel much less alone and was really appreciated. Hope u are doing OK today. And apologies for this briefish reply. I wil write a proper reply soon. Its just that I have developed blurred and double vision in last few weeks and its making typing tricky and a bit depressing.

So I’ll get straight to te practical point for now.Please also note that I cant remember where Ive put my law books! MS or disorganisation, I dont know. And so I will need to later double check that Im not giving the wrong info.

1**. Are u covered under the Act**? In general, an impairment has to have a substantial and long term adverse effect on a person’s ability to carry out normal day to day activities to constitute a disability for the purposes of the Equality Act 2010 (EqA) (which is the Act which contains the reasonable adjustments duty). However, a number of impairments, including MS, are expresely stated to be a disability under the EqA (see schedule 1 to the Act). This means that you are counted as disabled as soon as you have MS, regardless of what if any impact it is having on your. So that is first hurdle (not that it is a hurdle that any of us would have liked to have got over of course). You are “disabled” under the Act and there is a duty to mak reasonable adjustments for you in relation to your Masters Degree.

Please also note (though its kind of superflous on account of MS being covered from diagnosis) that the disability provisions of the Act cover mental impairments as well as physical impairments. And that the reasonable adjustments duty (see below) applies to making adjustments in relation tio mental impairments, such as if you are finding it hard to string words together for your presentations.

  1. The reasonable adjustmenst duty. In essense, the duty requires that that those who are caught by the Acts provisions (including your uni) take reasonable steps to avoid putting you at a substantial disadvantage compared to non-disabled people, and to do so by modifying barriers that might put you at that disadvantage and by providing auxilary aides and services.

There is an education Code of Practice which gives some ideas of the kind of adjustments that might be made. Though note that the list of posisble adjustments in the Code is non-exhaustive. Basically, your uni will be required to take ANY reasonable steps to prevent you being placed at a substantial disadvantage. This could certainly include “excusing” you from giving verbal presentations, either for now (while find your feet) or for good. Also it might well be reasonable for them to allow you an interruption while you come to terms with MS diagnosis; allowing more time for assignments; giving you more one to one support if need to catch up etc.

I will post link to the Code later when I find it.

Anyways, take care and please dont hesitate to ask any questions about any of the above or anything else.

And you Masters sounds brilliant.I really hope that you finish it quickly and get on to your PhD.

best wishes

Rupert

ps will dig out link for article that I mentioned.

14

one more thing

I forgot to say that as regards whether its anxiety or MS making it hard to give presentations is for all practical legal purposes immaterial. 1. I think anxiety can be a symptom of MS (whether a direct or indirect one). 2. there is no way for them to tell whether anxiety is a symptom (direct or indirect) or not. Therefore the duty clearly still applies in relation to anxiety and giving presentations.

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Here’s the equality act guidance for students :slight_smile:

https://www.equalityhumanrights.com/sites/default/files/what_equality_law_means_for_you_as_a_student_in_further_or_higher_education.pdf

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Forgot. Please also check out this Equality Act statutory code of practice for service providers.

Being statutory, it carries legal weight in legal proceedings and so education providers have to take it seriously.

best wishes

Rupert

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where should you look for a mindfulness book?

the course i went on was at trafford ms therapy centre and the literature came from the Buddhist centre.

the lady who ran the course had been trained at the buddhist centre too.

the course was called breathworks.