lesley-matt 17/01/18
Last reply 6 months ago
Coping with MS – my rant

i am struggling to copy with my MS. diagnosed in Sept 14 i have recently changed hospitals as i was getting no support from my nurse. my new nurse isnt much better. i have councelling tomorrow for stress and anxiety so am hoping that this will help me cope with my ms.
when i look back a year ago i could walk with a stick and was quite self sufficient. i now dont go out unless my husband takes me, and then its in a wheel chair having had a major relapse in June last year which set me back to walking with a frame and not having any independence of my own, having driven since and am now on ssp from work – so basically having quite a crap time
Lesley

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stumbler
6 months ago

@lesley-matt, I’m sorry that you’re going through a hard time.

Which type of MS do you have and are you on a Disease Modifying Therapy (DMT)?

MS can become quite constrictive and we need to do what we can to overcome this.

Personally, I would be asking for a Neuro-physio assessment, so I was aware of what specific problems I have and what I can do to address them. Your MS Nurse should be able to arrange this.

Counselling for stress and anxiety is also a good way forward, as these negative emotions are really bad for our MS.

Always look to the future and believe that tomorrow will be a better day. 😉


lesley-matt
6 months ago

Active progressive currently on Copaxone which is obviougly not working but cannot change as issues with blood tests.
I am usually a very confident person but after my relapse my line manager started bullying me hence the stress and anxiety I have been signed off since end October
Lesley


stumbler
6 months ago

@lesley-matt , that blood condition, does it preclude all of the now available DMTs?
The available list continues to grow with Ocrevus on the near horizon and Mavenclad (Cladribine).

Your Line Manager is on very dodgy ground with that attitude. Are they not aware of the protection afforded to you by the Equalities Act 2010! You may want to have a chat with your local Citizen’s Advice Bureau about that……

At the present time, don’t worry about work. Your health is more important.


lesley-matt
6 months ago

Thank u for reply they r trying to put me on fingolimod but to no avail I will note the ones u mentioned and ask

Done the citizen advice they say I have done everything I can have 10 yrs service wrote to hrs they don’t reply so waiting game game

Feels like my life is constantly on hold what with one thing or another
Lesley


stumbler
6 months ago

@lesley-matt . being Aggresively Progressive, you should be on one of the more aggressive DMTs. Your Neuro/MS Nurses should be looking at all options for you as a matter of urgency.

Have Steroids been considered?

And, do progress the Neuro-Physio assessment.

HR may be unaccustomed to dealing with situations like this. If they are not responding, go over their head. They’re answerable to someone and after 10 years, they owe you something.


lesley-matt
6 months ago

I asked about steroids when I had my relapse as I couldn’t walk but seemed to get fobbed off
Didn’t feel like I had any support so I just get on with it
Seeing therapist to so he may help
Tried physio but can’t find one that understands


stumbler
6 months ago

@lesley-matt , medical professionals may “guide” us to agree with their thinking.

Sometimes, it’s down to us to be “politely assertive” and take control. It’s the only way to get things done.

If you find problems with anyone at the hospital, contact their PALS team, Patient’s Advice & Liaison Service. They’re usually very helpful.

It’s the “squeaky wheel that gets the oil”! 😉

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