Last reply 3 months 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
5 months 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
5 months 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
5 months 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
5 months ago

@mariedicken , that is unacceptable.

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


mariedicken
5 months ago

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


stumbler
5 months ago

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


mariedicken
5 months 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
5 months 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……


mariedicken
3 months ago

I finally got my appointment with the consultant he said I didn’t look as good as usual but discussed what to do and asked me if I would come into hospital for 2/3 days for tests in the next 2/3months, next day I was called into hospital to go immediately and stayed 2weeks tests were done and I was asking staff to take me to the toilet as my legs are not good and as ward of six 3 were bed bound they were counting how many times I went some times not making it so wetting myself, test we’re done on my bladder and scans showed I retained 50% of urine every time.
I now have to wear a catheter full time to make sure my kidneys aren’t compromised but I cannot see me coping with this tied to my leg all the time for the rest of my life.
Marie


itsmewithms
3 months ago

Although I don’t see it promoted as a SPMS drug my Neuro and Mayo (strong US health facility in Rochester MN) both have recommended I start Ocrevus. I have started the paperwork and bloodtests to get started and they are setting up appointments for the infusion. In a wait state.

He also suggested that I look into a couple of others to make my decision: Mavenclad and Mayzent. Just some options for you to look into.

I feel sometimes that I have had to slow down, sit down and let the world spin around me as I can’t keep up. For example I went to a horse show a few weeks ago and the day consists of horses galloping madly around a field jumping cross country obstacles over a multi-km course. Of course I can’t try to keep up to that. I used to compete in that but that day I picked a nice jump with a good vantage point and was boosted on top of it and sat there and watched. That was fine. My daughter ran around and collected photographs for a photo competition she wants to enter in. We had a great time. One walk to get lunch and then to another vantage point by the water jump to watch more competition.

Went to the local “renaissance festival” last weekend. Kind of a silly thing where we all dress up in costumes (mostly based out of England in the 1500’s) and watch wonderful stage shows and musicians. It is a lot of fun. Again- I picked a stage that offered good shows and varieties and my daughter and teenage friends ran about at will. I moved between a few stages at different times of the day, when I could, and had a great day…despite the early rain and cold temperatures.

Life is what you make of it some days…some days are great and some days suck 😉 I choose to find a way to make as many of them as I can be great


jen1973g
3 months ago

Don’t spend money private change your neurogist get advice and advocacy.

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