hannah015 09/12/14
Last reply 3 years ago
Problems getting treatment

Hi all

Just wondering if anyone else is experiencing problems getting there treatment? I was diagnosed in March after a terrible relapse leaving me temporarily paralysed. I have recovered pretty much thankfully. I had an MRI in May which showed further lesions to my brain and drs decided I needed to go on Lemtrada, the new infusion treatment. Very lucky to be offered it but then my dr said it could rake a couple of months to set up being as it was new. That was in august and I’m still waiting. I have spoken to the complaints dept at qe in birmingham. They have been chasing and said they are having a meeting this week. I have now contacted my local mp to get this pushed through. My dr won’t allow me back to work till I have had treatment so not only is my health at risk but my finances while I’m waiting. Obviously I don’t want to suffer another relapse the same or worse while waiting like my dr predicted I would suffer in 6-12 months from diagnosis as my MRI was so bad. Has anyone else suffered same problems or know what else I can do. I don’t like sitting around waiting anymore. Sorry to Moan on
Thanks
Han x

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ruggermad
3 years ago

Hi Hannah

I think that I am one of very many people waiting to get started on Tecfidera, so you are not alone. As it’s a new treatment to the NHS here in England, I think that it might be along wait before we get started. This will be my first DMD since being diagnosed and I am hopeing I don’t get another nasty relapse before I start on the meds.

It’s a pretty frustrating time having to wait but hey ho, at least its nearly Christmas!


hannah015
3 years ago

Hey @ruggermad

Thanks for your reply. Seems there are many of us waiting. Maybe contact your local mp like I have today. They might be able to help if it’s down to understaffing or finance problems.
Exciting times for Christmas nearly here though, cannot wait for that


stumbler
3 years ago

Unfortunately, you don’t get anything in this world, unless you ask.

And, when you ask, you have to make sure that they’ve listened!

Assertiveness is key, but always be polite too. 😉


hannah015
3 years ago

Hey @stumbler

I am always polite and sweet :)but am also very proactive. Luckily my mp is being very understanding and wants to help. Hopefully it will bring awareness to fact many people are awaiting treatment.
If that fails I will just harass then till they sort it out 😉


stumbler
3 years ago

@hannah015 , you sound like a formidable opponent, just like me.

But, I bet you flutter your eyelids in a more appealing way than I do! lol 😆


hannah015
3 years ago

@stumbler lol, so far only emailed him but it may call for some fluttering 🙂


andypearl
3 years ago

In 25 years I have not been offered any DMDss. Don’t know why not though. Ive been through relapse remitting to now secondary progressive (apparently!)
The one thing that has helped is injecting myself one a month with B12 Injections. My gp has now said they are not recommended by NICE (the money saving organisation which spends money on boob jobs and stomach stapling!)
Aren’t the NHS here to serve us?!
Andy


stumbler
3 years ago

@andypearl , those “nice” people at NICE have commented on B12 supplements in their latest guidelines for MS (https://www.nice.org.uk/guidance/cg186) :-

“Do not use vitamin B12 injections to treat fatigue in people with MS.”

But, these are only guidelines…….


ruggermad
3 years ago

@stumbler In my case, I have asked, they said yes, you can start in November – Its now December and there is a problem with the funding for the treatment. For some reason my neurologist won’t consider me for starting on the interferons so have to wait I guess.

@hannah What did you say in your letter to your MP? If you don’t mind me asking


stumbler
3 years ago

@ruggermad , the following NICE Guidance may make interesting reading for you :-

https://www.nice.org.uk/guidance/ta320

Especially Section 5.1, which suggests compliance with these recommendations within 3 months. The Guidance is dated August 2014.

Funding should not be an issue which delays this treatment.


hannah015
3 years ago

@ruggermad. I got his email address from his secretary then explained about how ms has affected me and that I have been waiting for months for treatment. All the time I’m not being allowed to work by my dr. His secretary seemed to think he could help so fingers crossed.


stumbler
3 years ago

@ruggermad , you can usually contact your MP via their website. Google will find them for you. 😉


sinead
3 years ago

Hi @hannah015 I’m afraid I’m in a similar boat to you…
I have been steadily deteriorating over this past year, worse symptoms recently including ever shortening walking distances, numbness, brain fog, and the delightful bladder issues, and my neuro finally agreed to put me down for lemtrada! I was over the moon, his thoughts being that he wanted me on it before Christmas. It took a few months for me to hear anything else, until last week I was told that I had an appointment on the Thursday, with mind to starting the treatment the following Monday! Needless to say, I was so relieved. However, bombshell dropped when I mentioned for the 100th time this year that I read that it was suggested that people have a chickenpox immunisation (I never had the disease) before starting the treatment, my blood was tested and due to lack of response, I have to wait a minimum of another 3 months to start treatment 🙁 sorry for long winded reply, there is nothing anyone can do to help this unfortunately, but thought i’d share that even in London I’m still in a similar place to you! Good luck getting sorted soon! Sinead x


stumbler
3 years ago

@sinead , I am sorry that you have had to accept this delay. It seems like there has been an absence of “joined-up thinking” somewhere down the line.

Let’s hope they improve their processes…….


hannah015
3 years ago

Hi @sinead

I’m sorry to hear that Hun, horrible when you have your hopes up. It’s just so ridiculous that people are being left without treatment. I have my fingers crossed for you that you get your treatment soon

Take care xx


denisa
3 years ago

Hey guys!

Been reading your posts here, and I have to say, @hannah015, you are one lucky girl having a make neuro, as the fluttering might actually work. There’s a thing that people can’t resist a pretty face :))

But where does that leave me? My neuro is a lady? :))) I think the best method is flattery (almost the same word as fluttering, more or less :)) ).

@sinead & @hannah015 – As you I am also waiting for treatment. In fact, I am still waiting for the neuro telling me what needs to be done next after my LP. No results on that testing yet. She wants to see me next week… So bored with this waiting!

@hannah015 – hope all would turn out fine and you finally get your treatment to be able to start working again. Lots of luck! 🙂


denisa
3 years ago

A male neurologist! The autocorrect got me! :))


andypearl
3 years ago

Hi Fellow MSers,
I have have had MS for 25 years now.
Relapsing/remitting and now apparently Secondary Progressive. Like to actually know how they decide what stage you are at when they don’t know how MS comes about and no cure?!
I have not been offered any DMDs but on A LIST for Beta Interferon right up to a change of Government and then removed for some reason
I have therefore given up fighting for DMDs and gone down the route of self help through research into Diet, Supplements and exercise. Feeling better overall!
I do realise of course that everyones MS is different as far as symptoms are concerned.
The one drug I really would like to get on is Sativex but I think more chance of getting a free trip to Saturn and back with free Champagne on the journey 🙂
This is just my take this subject.
Andy


stumbler
3 years ago

@andypearl , the change of diagnosis to Secondary Progressive can seem pretty subjective. My diagnosis changed without any defined tests, just based on my account of how the last year had been!

This definition of Secondary Progressive MS (SPMS) might help to put things in perspective:- http://www.mssociety.org.uk/what-is-ms/types-of-ms/secondary-progressive-spms

If you are now SPMS, then DMDs would be of no use to you. DMDs address relapse activity, by reducing the number and severity of relapses. And we should no longer be having relapses.

Diet, supplements and exercise are a good way forward to managing this condition.

As for Sativex, Saturn looks very good at this time of year. The rings are something to be seen! 😕


hannah015
3 years ago

Hey @denisa

Firstly many thanks for the compliment 🙂 and you never know the fluttering could work, worth a try 🙂

I know what you mean about the waiting, does seen to be slot of waiting with ms. My last MRI I had to wait 3 months for results. It showed more lesions so was shocked I didn’t hear sooner. Been waiting since March for treatment so all bit ridiculous. I have been considering doing some campaigning regarding ms because it seems a lot of people are having to wait, whether it’s funding or resources. It seems unfair to leave people waiting when it’s our lives on hold over it. I am going to speak to local mp when he gets back to me see what to do.

Have my fingers crossed you hear something soon Hun

Xx

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