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Need some support

Hi I have had 32 infusions of Tysabri and untill recently felt not too bad. I started to be very forgetful and feeling unwell so my consultant told me to have a Brain scan , Lumbar puncture and JC virus blood test. This was 5 weeks ago i have had no support or anyone contact me . I feel very let down and not sure i want to go back on Tysabri , but i have started to walk with stick again and my legs are very weak. I am so fed up with the lack of support and just want to tell them i will deal with this myself .Scared to go back to see them as dont want to be told to do something im not sure i want to do . I know im having a relapse but hate side effects of steroids so holding off at the moment .

Cheers Elle

I am so sorry to hear about the awful way you have been treated , it is nothing short of shocking!
I feel ashamed , at times , to work for the NHS - which is supposed to care!!!
I too have been neglected by GP and consultant . Scans nearly 3 weeks ago and nothing.
I think I will put in a complaint.
It is just not good enough!
in the meantime , dear friend , do you have family and friends to support you?
xx

That’s terrible Elle! They are always claiming to be hot on monitoring people for PML and here they are doing tests and not even letting you know the results? Inexcusable!

Can you get your GP on the case for you - chase everyone up?

I think I’d be sitting outside the neurologist’s office doing a sit in by now if I were you :frowning:

I suppose the positive way of looking at it is that if there was any hint of PML, they’d have had you back at the hospital long before now. But to make you wait. Maddening!

(((hugs)))

((((HUGS)))) for you
Clarexxx

ellepayne wrote:
Hi I have had 32 infusions of Tysabri and untill recently felt not too bad. I started to be very forgetful and feeling unwell so my consultant told me to have a Brain scan , Lumbar puncture and JC virus blood test. This was 5 weeks ago i have had no support or anyone contact me . I feel very let down and not sure i want to go back on Tysabri , but i have started to walk with stick again and my legs are very weak. I am so fed up with the lack of support and just want to tell them i will deal with this myself .Scared to go back to see them as dont want to be told to do something im not sure i want to do . I know im having a relapse but hate side effects of steroids so holding off at the moment .

Cheers Elle

Hi Ellie, am I doing this right? Anyway, yes love, I know how it feels to be left out in the cold…saw my 12th neuro in Feb, who was annoyed at the way I`ve been chuffed about. Said he would get this dx sorted out once and for all…that was in Feb…heard nowt since, despite chasing him 3 times.

What a load of bunkum, eh?
luv Pollx

Hello Elle. I’m sorry you feel left out in the cold with no contact at a time when you really need it.

My own experience is that the NHS is fab at many things, bur communication is not always their strongest suit - particularly when there are letters to be typed - they can sit in an in-box for an age while people go on holiday/change offices/change sex, or whatever, it can take forever - the same thing can happen if, for instance, the neuro wants to talk about the scan results with the radiologist, and maybe they have a weekly meeting but for some reason a meeting has been cancelled…and…and. The weeks can go by so quickly in this kind of environment, although the time passes so slowly for those of us waiting for news.

Of course it isn’t really a letter you are after, I suppose - just a phone call to say that all is well. It is a real shame that this has not happened - it is such a small part of the effort involved in your care, but so important and would mean so much.

I think your first priority here is to be firm about getting an appointment with your neurologist. There is a lot to talk about. Your test results, your current difficulties, what they want to do about it, what your options are, and so on. I completely understand that part of you does not want to have that conversation, but your post does suggest that the current state of affairs is no good either, so biting the bullet and talking to them is probably the lesser of the two evils.

I hope you get some answers soon

Alison
x

Elle,

Shouldnt your gp be supporting you through all this. Isnt she/he asking questions on your behalf, making sure you get seen when you need to be seen. I was told by my neuro that gp’s have more sway than they do - hence appointments are better made through them.

Get them phoned up tomorrow, tell them its urgent because it is and either have a telephone consultation where gp takes over and organises things or go visit. Crack the whip and get them moving even though your probably not feeling too good at the mo.

Its dreadful nobody takes control anymore, cares, nor wants to help without lots of shouting.

I hope if you do ring gp something is done asap. You shouldnt have to sit thinking what do I do next, you need expert advice and support, both lacking at the mo.

Take care,
bren
x

Thanks so much for all your kind words and advise :smiley:

I have asked my GP before and he said he didn’t know much about MS or Tysabri and to contact my consultant. To be honest trying to get an appt at my doctors is more or less impossible.

Im just worried he will bully me into going back on Tysabri and I’m really not sure I want to. I feel better in myself , not so down and clearer I just wonder what it was doing to me . I have spoken to the nurse on many occasions when having my infusion about things that felt wrong, all they ever said was its nothing to do with Tysabri ! In the end i stopped telling them .

Just feel so let down and I cant be bothered to chase it up, feel like telling them to stick it !!

Thanks again for all your comments and kind words , much appreciated and i dont feel as much alone now. I have the most wonderful husband and family so i am very lucky , its nice to talk to people who have similar experiences :smiley: