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What else can I do....? Seriously annoyed now!!

Quick rundown. On Rebif from 2004 to 2013. Started Gilenya May 2013 but had three sensory relapses on it. Saw a neurologist in January and we agreed it wasn’t working so a new MRI scan was ordered and she said she would refer me to Addenbrookes whatever the results as there was nothing left that they could prescribe. Came off it April 2014 after another relapse. No relapses since or any other symptoms but my fatigue is horrendous - back to 2004 levels before Rebif and obviously I’m ten years older - and I’ve not worked since May. I know DMD’s aren’t supposed to help fatigue but the two I’ve been on clearly did as I was functioning and having a relatively normal life (apart from the relapses)

However, on getting the scan results, the neuro I saw in January decided she didn’t want to refer me but at my insistence and a LOT of pushing, I finally saw a neurologist at Addenbrookes at the end of June as I wanted to be considered for either Lemtrada or Tysabri. In a nutshell, my MS is too mild for either so he ran through my options - the other interferons, Copaxone or Tecfidera when available. Interestingly, he wouldn’t have put me on Gilenya. He discharged me and referred me back to my NHS Trust to prescribe my chosen option.

I have decided to wait for Tecfidera after I spoke to my MS nurse in August and she said it was going to be “October realistically” for it to start being prescribed. We agreed to check in again at the end of September to find out more as they were going to be having a big meeting with the PCT that month about all the people wanting to change drugs which I’m now included in. Since then, I have left her four voicemails…nothing. I have also now left two voicemails for the secretary of the neurologist I saw in January…still nothing!!! Not even a call back! :frowning:

I’m due back at work next week but there’s just no way I can work right now with the fatigue as it is - plus I’m relatively stable other symptom wise so don’t want to rock the boat especially since I’m not on a DMD. Although they’re really supportive, I need to give them some idea of when I might be returning - it just sounds like I’m taking the piss when I keep saying “I’m still waiting for an update” which is what’s happened for the last three weeks!!!

I just don’t know where to turn next to get some answers…?!! Any ideas welcomed.

Hi . I know it is annoying when your wAiting to hear from people but in the world of MS I have realised nothing gets done quickly!! You have to think of yourself first so don’t worry about work as they will get on with it!! Try not to stress as this might make you worse. Sorry I can’t be of any help . Janet x

Hi Janet,

Oh yes, I certainly know that after the neurologist agreeing that Gilenya wasn’t working for me in January and here we are in October and we’re still absolutely no further forward.

But I’m not stressing about it - it’s just so incredibly frustrating. I don’t get sick pay either so have been surviving on SSP and credit cards. I just wish they would realise that people have lives you know!

Hello RR

I would suggest you contact PALS ( patient liaison services) or something like that…my brain on go slow

They are based at the hospital.

Good luck-let us know how you get on.

What I meant was, I can’t remember what PALS stands for

Oh, I don’t know either Blossom but I will look into that, thank you :slight_smile:

Hi RR,

Brilliant name;

If you need any help at or getting to and from work contact Get support in work if you have a disability or health condition (Access to Work) - GOV.UK plenty of help available.

Good luck.

G

Access to work can also conduct on site assessment that can make suggestions for making work easier - I don’t know what type of work you do, they really supported me and still do with transport.

PALS is Patient Advice and Liaison Service and can be contacted at your local PCT (primary care trust).

Thanks for all the information guys

I’ve left a message for PALS to call me back as I’ve still not heard anything.

On the phone now trying to make reduced payments with all my creditors

Let me know if you have any problems. I know a guy close to me who used a site to help him sort all his debts. Maybe able to contact him and ask him for the contact details. Good luck xx

Thanks Blossom, I’ve already spoken to Step Change, debt charity who have basically told me I either go back to work or I declare myself bankrupt…working in finance myself, that’s the last thing I want to do

What a shame they’re messing you about so much :frowning:

Even if you do get Tecfidera, it won’t help with your symptoms like fatigue, maybe you could get some symptom medication rather than DMD in the short term to help you back to work? I think its modafinol (??) they recommend for fatigue?

Hope someone answers the phone soon, that is shocking!

Hi Red Lou,

I’ve tried a drug to help with fatigue before - it didn’t work and just made me feel worse - it was Amantadine.

I know DMD’s aren’t supposed to help with fatigue but I can categorically state that both the ones I’ve tried absolutely did. I know how I felt before I went on Rebif ten years ago and this is exactly the same. In fact, I actually came off Rebif for three weeks at one point (due to the switch to a RebiSmart) and it was just like this - totally running on empty.

Hopefully, I’ll get a call from PALS tomorrow!

If i can’t get anywhere with the hospital - i go and see my g.p and he usually gets things moving for me. He will call and find out. They usually respond to g.p. asking for an update.

I was on rebif for 9 yrs. I am now on week 12 of Tecfidera. Doing well so far.

Good luck with it.

Teresa.x

Thanks Treek. That’s good to hear - really hoping it does the same for me. My GP doesn’t really get involved as the NHS Trust I’m with is outside his area - in a different county actually. My MS nurse agreed to keep me on when I moved which is another reason I’m really not liking this situation.

Update: a lady from PALS called me this morning so I ran through it all with her. She called me back twice more - once to say she was on the case and had left various messages and the second time to say she managed to speak to the neurologist’s secretary (amazing huh…?!) who said no, it’s definitely my MS nurse she needs to speak to. She said she’s left voicemails and also paged her…no response…so it’s looks like she’s getting the run around too! She said she’d call me again tomorrow.

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