Last reply 2 months ago
I am getting so frustrated.

So, diagnosis started last year and I was recently admitted to Queens Square and discharged on 4th March with a diagnosis of RRMS. I was discharged with a letter saying that I would be seen within a follow up clinic within 6 weeks. I have just been told that my follow up appointment will be on the 11th June which is actually 14 WEEKS later!! This appointment will be to discuss DMT’s and where we might go with treatment but the problem I have is that the longer it takes then the more I question DMT’s and the potential side effects. At the moment I am relatively well and continuing to work full time and lead a generally normal life and what I don’t understand is whether I should be taking a DMT whilst I am well and whether this is likely to prevent further deterioration or whether I can wait until I am unwell and then start taking the DMT. I will obviously ask my specialist this but the wait is very frustrating and just leads to me questioning everything!

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highlander
2 months ago

@mthorn
Hi welcome to the club.
I can only speak for myself in this instance but I’m sure there will be a few others that will agree..
I had symptoms of ms years ago but kinda brushed them off as just the usual ailments people have as they get older, I worked and was extremely fit.
So fit doctor’s just used to tell me I had a virus or pulled a muscle when I very rarely go to see them.
Fast forward to know…
I can hardly walk or even talk.
Had I got a diagnosis many years ago and been given the option of meds I’d chew their arms off to have them.
I might still be able to walk and talk.
I didn’t have the same opportunity as you have now.
But the choice is yours at the end off the day.
That’s just my opinion…
Hind sight is a wonderful curse at times.


mthorn
2 months ago

Hi Highlander
Thank you for this. It is exactly the kind of response I was looking for. If I know that the DMT’s might give me a prolonged period of improved mobility/general healthy then it probably helps in convincing me more that anything else.


bernadette
2 months ago

@mthorn I’m sorry to hear about your diagnosis; not surprised you’re frustrated but suggest you use that energy to follow up on the telephone and insist on an earlier appointment.

It is just the way that hospital works, it is part of a much larger Trust and delays are rife. Its is not helped by them having had a new computer system in the last month (April 2019) and its been Easter and the season of the bank holidays.
My suggestion would be to contact your Consultant’s secretary (if you know who your Consultant is) or contact PALS (patient advice and liason service) details on the hospital website.
And, don’t take no for an answer. It is a pity but you have to be like a dog with a bone to get what you need.
in the meantime research DMDs so you can go into the appointment armed with what options you will or will not consider. It doesn’t pay to be a passive person with MS; a LOT of self-care and knowledge is required.
good luck


potter
2 months ago

I was diagnosed when I was 55 that was ten years ago. I asked for treatment immediately, I had two aunts who had MS before there was any treatment. I knew what they had gone through and wanted to slow this disease down as much as possible. I can still walk (not as far or long as I want) and have good balance. I just had a new MRI and my neuro called and said I had minimal progression of my MS since my first MRI 10 years ago. Sometimes it takes a couple of tries to find the right DMT. I took Rebif shots for 5 years, I always felt bad the day after my shot. I started having skin rejections and switched to Tecfidera which was new in the US. After I got through the first month of side effects I felt like I was free and able to carry on a normal life. If you live in the UK you have more DMT’s available to you, in the US you have buy your own insurance and can only pick from a list that your insurance company covers. I was lucky the insurance company we had would cover the cost of Tecfidera for five years. It cost over $100,000 a year here for any MS treatment. Good luck with your decision and do your research. Potter


mthorn
2 months ago

Hi
@bernadette – I know what you are saying about chasing things up but is there really any point? The NHS is a wonderful thing but do you not just have to accept the delays? I have had orthopeadic surgery (collapsed discs in my back) which were cancelled on numerous occasions and overall took three years to complete. I have experienced seizures and the frustration of cancelled appointments and long waits and I get to the point where I think you just have to grin and bear it……am I wrong?

@potter – Thank you for sharing the experience. At least here in the UK treatments are not generally controlled by cost (or are they?) and you appear to get a fairly free choice. I definitely want to do everything I can to slow the progression of this condition but there is just something that makes me cautious of drugs that can have such negative consequences


stumbler
2 months ago

@mthorn , there are quite a lot, who grin and bear it. You just never see them at the front of a queue. It is the squeaky wheel, which gets the oil after all. Mistakes are made and some people get overlooked or fall down the cracks. Don’t let yourself be one of those.

As far as DMTs are concerned, you have to treat them as an insurance policy. Now, you wouldn’t want your home to burn down, but you also wouldn’t wait to see smoke before you insured it.

DMTs are powerful medications. And like all medications, they come with the risk of potential side-effects. You just have to weigh this risk up against the unpredictable nature of MS and the risk of what that might do to you. The difference with side-effects is that serious risks are monitored closely so that your DMT can be reviewed before the risk breeches a threshold of when it becomes too dangerous.

Adopting a DMT, or not, is your decision. It’s a decision which isn’t cast permanently in stone and can be reviewed.


bernadette
2 months ago

@mthorn as someone who has worked in the NHS for many years and, more to the point, with 3 members of my family needing many interventions by me to get anything done I would say YES and YES again to chasing things up.
I have personal experience of the hospital you mention, and another family member is under the larger Trust. We would be nowhere without constant following up and checking. Its up to you whether you want the ‘frustration’ of waiting or the hassle and work (and its both) of trying to move things along…for YOU
No one else in the NHS will be as motivated to care for you.
Just sayin…
x


potter
2 months ago

It is a hard decision to make on a DMT everyone is so different when it comes to MS. One of my aunts lived to be seventy five and died from cancer not MS. Because of her foot drop she had to use a cane or walker but never was wheel chair bound. My other aunt had to go to assisted living when she was in her early 30’s. She died when she was 50 from brain shrinkage from MS. This was before any treatments were being used, both of my aunts were on the Swank diet. I try to live a stress free life and eat anti-inflammatory diet and some supplements. My neuro had me see a physical therapist when I was first diagnosed. She gave me a regime of stretches to keep away leg cramps, stay balance and walking. I have been doing them for 10 years. Potter


smurf69
2 months ago

@mthorn – I’m recently diagnosed after 2 year’s CIS. Had Rebif in 2017 but taken off due to lowering of white blood cells.

Discussed DMTs with my neurologist/MS nurse versus doing nothing as I’m described as having a “mild lesion load”. My neurologist wasn’t in favour of doing nothing as current thinking is to hit MS hard.

I started Ocrevus on Monday. I can’t say it’s been easy. Firstly choosing in view of the risks and secondly how I’ve been this week – tired, achy, nauseous and dizzy. But I’m hoping that this is a small price to pay to keep me how i am today.

Good luck in choosing.

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