It's been a mad few weeks!
I was referred to a London consultant when I expressed some doubt over PPMS as bowel issues (frequency & urgency) were completely resolved by steroids and I expressed interest in trials to my rehab consultant. I think my age threw a curve ball too on my original diagnosis and I was clueless about MS, I thought I had a trapped nerve!
So, I saw the consultant and we talked in more detail about my history (I saw a chiropodist 10 odd years ago about a numb big toe and can't keep a flip-flop on my right foot. I also see gastroenterology and have had loads of tests but they still can't diagnose), he agreed that a more aggressive approach was required and we discussed DMDs and he ordered new MRIs – The following week, I got a phonecall on a Sunday afternoon about a possible trial!
My MRI showed I have active lesions and resolved lesions – when I saw my MRIs, I just didn't recognise them... there's a lot of scarring. When I saw the consultant again, I checked if the offer of DMD's was still on the table if the trial doesn't go ahead for me and he said yes
So, I have RRMS after all. He booked me in again for a few months time and agreed he'd give me Tecfidera (tho he'd rather Tysabri) and I could cancel it if the trial went ahead.
The trial is for rapidly evolving MS, it’s a stemcell one but there's no chemo
I feel like there's at least some hope now and there’s some treatment available to me, really hoping for the trial but waiting biopsy results to rule out Crohns.
I hope that makes sense, I'm still a bit giddy!
Sonia xx
It will take just 37 seconds to read this and change your thinking..
Two men, both seriously ill, occupied the same hospital room.
One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs.
His bed was next to the room's only window.
The other man had to spend all his time flat on his back.
The men talked for hours on end.
They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation..
Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.
The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and colour of the world outside.
The window overlooked a park with a lovely lake.
Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every colour and a fine view of the city skyline could be seen in the distance.
As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene.
One warm afternoon, the man by the window described a parade passing by.
Although the other man could not hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words.
Days, weeks and months passed.
One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.
She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.
Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside. He strained to slowly turn to look out the window besides the bed.
It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window.
The nurse responded that the man was blind and could not even see the wall.
She said, 'Perhaps he just wanted to encourage you.'
Epilogue:
There is tremendous happiness in making others happy, despite our own situations.
PS Yes, this had me in tears too. But, I've just returned home from my son's wedding, so I'm all over the place emotionally!
Hi everyone - sorry to post again, been trying to make sense of this all day but can't. I had a visit from my nurse yesterday and it has left me very confused.
I filled her in on how the Rebif had been going very well, been getting a few headaches but nothing too scary. Going up to full dosage on Friday. Also how all my symptoms (old & new) keep flaring up. I have (in no particular order) Headaches, tremors, numb arms and legs (worse in the morning), fatigue, poor walking stamina, blurry vision, burning/heightened sensations, memory & concentration issues, tinnitus and an array of muscle twitches & pain.
She was concerned that i had so many symptoms, so early on after diagnosis. I have now been prescribed clonazepam to help with sleep and twitches and been told to up my gabapentin dosage. It was agreed the heat has had an effect on things but that it isn't the cause of the symptoms.
Then we talked about moving consultants (had been talked about before, agreed in theory but never happened in the end) as she thinks it may be necessary, because of my age and progressive like symptoms, to start meon a more potent dmd like tysabri or gilenya, and that would only be possible under the care of the MS-ologist (her word not mine!)
So i have an appointment with my neuro in early Sept and have been told by the nurse to explain everything i told her to him and let her know what he suggests. I think it's unlikely he will suggest different treatment as i've only been on the rebif a short while?
I am just confused as i thought the use of the drugs was determined by relapses not symptoms??
I have had 4 relapses within 18m which is not loads or is it? Have i missed something? During the talk i got very confused but didn't know what to say to feel less confused. I hope at least one person knows what i'm rambling about? I'm not even sure i do :-/
Laura
Hi all hope ur all coping with the hot weather! !
Had my 1st appointment with my ms nurse today. She was lovely spent a whole hour with her and she was very helpful indeed.
We went through my symptoms and my confusion over replaspeses!!
We went thru the dmd's which is available to me and I have taken the plunge to go for rebif . Not looking forward to it mind hate needles. But surely it can't be any worse than having b12 injections - which I mite add I have to have another 6 of them again!!
She did tell me it should only take 2-3 weeks to sort it all out but I won't hold my breath lol.
So all in all a really good appointment.
Vanessa xx
So after a long wait , i eventually get to see my MS Nurse this Wednesday,
Ive read up on some stuff on what to expect and what questions to ask ,
but i suppose every body's experience is different
has anyone got any tips on what to ask , something they wished they had asked
on their first visit , so i can ad it to my list ?
Thanks for reading
Mal
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