Looks like I am going to be fobbed off...

Had a letter this morning from my eppy nurse. She has spoken to the useless neuro who said my symptoms were just down to my age. He has said he wants me to have a blood test to check thyroid levels even though I had it done in May and it was fine. My problems started before then.

It also said that if nothing was shown in that they will start me on propranolol for my tremor. Thing is I can cope with the tremor, its the other things that I can’t deal with.

So it looks like I will get these then be dumped. I have been sat here crying since I opened the post, I just want it all to stop.

Oh no at least you have been given Proprananol, after my clear MRI I have been taken off this! It did not seem to help, made me even more tired, if that was possible. I am now being weened off Prozac, even though I feel bad and depressed in the hope that Amtriptyline might help. What’s the worst thing that you have to cope with? Is it worth having a go at your Gp about something to treat that? I seem to have so many symptons, think it might be just best to concentrate on the worse one, try and get that sorted, then go on to the next one. I know just how you feel and the thought of being dumped and thrown on the scrap heap does make you feel useless and let down. A friend of mine said that, if you can, shout as loud as you can, make a nuisance and don’t let them forget about you. Keep a diary of symptons and improvements if any. You never know it may lead to that extra appt or test in which someone stops to think, hang on, this with this could mean its x. Looks like loads of us are in the same limbo boat, we can’t all be making these things up!? I might be a duck, who has a bit of a croak, but I think I am still a duck! Take care Drink tea and eat chocolate and biscuits, I find it helps!

Thanks Apple pad. I get almost constant pins and needles, weak right side and I can’t walk in a straight line. I’m also in constant pain and have numbness.

My GP has written asking for it all to be sorted but nothing has happened. I had an MRI on Thursday but nothing has been mentioned and I don’t even have a follow up appointment.

I’m so fed up with it all.

Hi Nikki, I have a feeling that may happen to me, I’m getting on. a.bit, do you think it may be a NHS cost cutting exercise ? It may sound cynical but it doesn’t mean it’s not true, or, am I just being paranoid. ? (((hugs))) Frank x

Hey Nikki As you have just had MRI, they don’t normally make appt straight away, don’t fret. Your GP is following up, so let them. I suggest you start being a total pain in the ars* and bug the neuro secretary at least twice a week, and even though yr GP is ok give them home too. Take it ease M,e x :slight_smile:

I’m seeing my eppy nurse tomorrow so will talk to her. I do have a neuro but she is an epilepsy neuro, the useless one is for movement disorders. Am going to try and push for the ms neuro but won’t hold my breath.

If I don’t get anywhere I’m going to see if I can get a brick wall on the NHS to bang my head against.

Dont bang your head on a brick wall, it will hurt, tell yr eppy nurse hoe u feel and that deing is regarded is not helping. Lay it on thick. Brick walls on the NHS don’t do it, they are not available when you want one.

There seem to be loads of us who are supposed to accept that these symptoms are ‘just a part of aging’ and one Dr even suggested it was all down to lack of exercise until my OH pointed out that I used to run 2 miles 4 times a week until just under 2 years ago when my body suddenly packed up and now, somedays I can’t even walk across the bl00dy road!

Keep on keeping on hon!


I should have taken your advice Clare. Instead I started tidying up, took some stuff into the other room and my legs went and I smacked my head on the side of a wooden storage box! I now have a spectacular looking lump and bruise.

Hubby was trying to get me to go to a&e but I’m seeing my epilepsy nurse in the morning so will hang on until then.

You know those days when you wish you had stayed in bed…

Hope you are ok my lovely xxx

it’s so daunting sometimes - but you’ll find your strength again & trust that you’ll get there xxx wait for the results of that MRI before jumping to conclusions - take the blood test too xx you never know

xx stay strong xx

Ps - I was going to say keep your Pecker up - but I was scared you would just Quack at me!!xxxxx

I have autoimmune hypothyroidism and my levels can change. Even when they do they only get rechecked after 3 months, so if you had them checked in May they should know that it is too soon. Also when you get checked get your thyroid antibodies looked at as an extra. Have you tried PALS?

Thanks anon. I had half my thyroid removed 6 years ago and get it tested once a year and its always been fine. Guess I just have to go with it for now.

I’m going to wait for the results of my MRI then think about PALS, if I ever get the results of course, they are now saying 4 weeks!!!