brownk 22/12/14
Last reply 3 years ago
Staying postive

So…..It is highly likely I have MS. Still waiting to see and hear about the results of my recent brain scan. I have some spinal lesions and have a neurologist letter telling me all about these. I am just struggling…struggling to stay strong for me and my family I am fine one minute and then teary the next! I know I’ll hear about the recent brain scan soon but just need to know what’s going on and think that is my main concern at the moment.
So when I get my next neuro appointment what will happen? Will it be fairly quick for me to get on meds?
Any tips on dealing with emotions? ☺
Thanks all x

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stumbler
3 years ago

Staying positive is all about accepting what’s going on, so that you can get on with your life. Now, as you have seen with your emotions, that’s easier said than done!

It’s been documented that getting a diagnosis of MS takes you on a journey to acceptance that passes through several phases. It can be a rollercoaster ride.

The seven stages of this journey are :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

and it’s not a direct journey from 1 to 7. You can double-back and revisit phases.

So, be patient with yourself.

When you see the Neuro, you will want to know where you’re going treatment-wise, i.e. DMDs. And, you need to know what medications are available to you for any annoying symptoms.

You should also be assigned an MS Nurse, if you haven’t already got one. They’re available, at the end of a phone, to answer any questions/worries. The just specialise with MS patients and are normally a lifeline.


brownk
3 years ago

@stumbler thank you! The 7 stages are really interesting and certainly ring true for me. I’m up and down the list 1 to 5! I really want to move forward and then something comes into my head that sends me back up the list…I’ll get there I’m normally such a strong positive person. Patience.
Love this time of year and I think that’s playing with my emotions too!

Looking forward…I’ll be interested to hear about the DMDs and my options ☺

Thanks again


stumbler
3 years ago

@brownk , the journey can take up to a year, but I hope it will be easier now you know where you’re going….. 😉


naim
3 years ago

@stumbler omw lol! does everyone get assigned an MS nurse by the neuro lol!
i just thought my MS nurse was being an awesome person to me cause she just is lol!!
wow news to me lol! but kind of makes sense.
I just thought because she was a sister from the pharmaceutical company that supplies my injectons she was just trying to ensure we can handle all MS side effects from the injections.
but that aside shes an awesome person – she was my life saviour when i got diagnosed.
even though my neurologist wasnt there for all my MS questions im so grateful that she introduced me to the ms nurse from the pharmaceutical company.

[email protected] – you will get to number 7 – just know that you will feel better –
the next day is filled with new possibilities.

whats helping me pull through is focusing on progressing in life focusing on things that make me feel good – focusing on my goals – and being grateful for all
those little things life is offering me and finding the positives and focusing
on the positives of been given ms. which you will learn on your own. i learn everyday still since iv been diagnosed.its good to keep learning though.
im grateful that im more health conscious – menatally , physically and holistically – which in turn helps me progress toward alot of my goals in life. im more aware and focused which i like.
#holisticlivning #GRATEFUL #positivity #healthy


stumbler
3 years ago

@naim , it’s the way it works in the UK. The MS Nurse is part of the Neuro team, so is a quick route to the Neuro.


naim
3 years ago

@stumbler thats kool – MS is not as popular in South Africa.
but the pharmaceutical companies try to assist with the understanding and how to beat the challenges faced and making life more comfortable.
my neuro doesnt have a MS nurse but she introduced me to the nurse at the pharmaceutical company whose been my best ms resource and first point of call.


jonesbear
3 years ago

I think I’ve just about reached stage 5 but do return to stage 4 now and then.


lina
3 years ago

@brownk I got dx in June another mri scan of brain in October lesions are stable and MS not progressive so I have not been put on any dmds just on meds for nerve pain. I have finally accepted my dx of MS so being reviewed in April unless I have a relapse.

Lina


Anonymous
3 years ago

Hi Bownk

I think it’s totally understandable you are up and down. Your world has suddenly shifted from under your feet! Waiting for MRI results and the not knowing part is very hard to deal with too. Personally I really dislike the stages of loss model but would agree the first year is by far the hardest. My emotions were all over the place the first few months – I was having scan after scan, my head was spinning and full of fear. I cried a lot too!

Taking some of the pressure off me at the time helped. I have a stressful job and dropping a day for a while really helped. I also made time for friends and family, my interests and hobbies. I’m probably less goal orientated than I once was and more aware and led by my values. I’m not at the point where my middle name is serenity but calm has returned!

Ultimately do whatever feels right for you and don’t feel you should be feeling a certain way or dealing with it a certain way. It’s also ok to ask for help. People that care for you will want to help – it will make them feel useful. Basically don’t be too hard on yourself right now. I really hope it’s good news but if it is MS you will be ok.

For your neuro appointment you could write down a list of questions you want to ask. The MS Trust and MS Society websites are worth looking at re meds and eligibility so that you have some understanding of this ready for your appointment. In my experience it is helpful to be proactive about these things to get the most out of your appointment and take some control over your health.


brownk
3 years ago

Thank you @sandwich it is so good to hear from others and that they made it through!
I hope I get my neuro appointment through for the new year so far I’ve just seen him to hear the MS high possibility and then had tests, I just feel I need to know so much more.
I wake up in the morning and it’s the first thing I think about and then the last at night. I then consciously think over my body and feel what is numb today or if something hurts. I’m sure this is a common thing to do in the early days. I will def make a list of questions. ..my first being can/will the feelings I have at the moment go away..ever. I have a weak left leg and a tingling arm and tummy. Everything else I can live with but my leg….ughhhh I could do with it feeling a lot better!


tabbycat
3 years ago

Hey, I know what you are going through. That constant body monitoring is exhausting and I can’t say after 2 years of being diagnosed I have stopped it. It will be the only thing you think about for a long while and it maybe the only thing that you want to talk about too. The problem is that no one else wants to talk about it, which is why this place is so good! Keep learning and reading and asking questions and don’t expect yourself to just get on with it. This is a scarey time, but it will become the new normal, and you will eventfully surprise yourself by suddenly realizing you have not thought about it all day and things didn’t seem so bad, but until then, be gentle with your self and stay in touch . Big hugs.


naim
3 years ago

@tabbycat love the way you said that “the new normal” its so true 🙂
the new normal for the better.


brownk
3 years ago

@tabbycat thank you for your response as @naim said what a lovely way of wording ‘normal’. I just hope my appointment comes through soon so I can unleash my questions and find out what’s going on under my skin!
I look forward to the new normal and clearing my mind of all the what ifs and questions (altho I know I’ll always have some)
xxx

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