Last reply 3 weeks ago
Holidays in Cornwall

I am currently in Cornwall holidaying with my daughter her husband and 2kids and their staffy. My husband who I could not do without decided to rent a large house near st.
Austtell it is utter mayhem and I who cannot walk and are in constant pain just sit here and watch them enjoy playing games and realise just how much MS has robbed me of a life I should be enjoying I blame my neorolgist he has never gave me ms drugs to slow it progress.
When now in retirement and very comfortable we both worked all our lives for this, my next
appointment is in September and will use some of the money we have put by if he does not help this time I will go private, has anyone else gone private, and while they enjoy themselves I will go to bed.

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stumbler
1 month ago

@mariedicken , your post really resonates with me. MS is a robbing b*****d!

But, it is what it is. It could always have been something worse, so we have to count our chickens and and try to make the best out of a bad job.

Do you have a wheelchair or mobility Scooter with you in Cornwall? If not, perhaps you could hire one. It might enable you to be a bit more involved.

With reference to going private, it would get you a quicker appointment and the Consultant would spend more time with you. It all depends on what you want and whether it is available to you. You are entitled to a second opinion, with a consultant of your choice at another hospital. Would that help?


mariedicken
1 month ago

Hi Stumbler, yes I have scooter and and today had a lovely day visiting Newquay the weather was hit and miss but the kids loved it so I loved it, but now where home I’m shattered so early bed ready for tomorrow
Thanks Marie


mariedicken
1 month ago

I’ve just had an appointment come from the hospital my next appointment was 9th September which I needed to see him about starting a drug treatment the appointment is now next year in August so it 2yrs till I see my consultant what was it worth working all my life and paying tax and national insurance to be treated this way


stumbler
1 month ago

@mariedicken , that is unacceptable.

Contact the Patients Advice and Liaison Service (PALS) at your hospital to report this.


mariedicken
1 month ago

They made a mistake they sent out next years appointment before this year spoke to my ms nurse and she explained Marie


stumbler
1 month ago

@mariedicken , all’s well that ends well! 😉


mariedicken
3 weeks ago

Can anyone with spms tell me if they are on any medication my consultant tells me there isn’t anything I’m sick of listening to his lies
Thank you
Marie DIcken


stumbler
3 weeks ago

@mariedicken , your Consultant is right………………… and wrong.

As far as Disease Modifying Therapies (DMTs) are concerned, none of them are considered to work to slowdown or halt Secondary Progressive MS (SPMS).

However, there are medications available to help us manage the symptoms of MS.

I hope this clarifies……

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