Help - worst nightmare!! 8(

Hi all

I just sent an e mail to the neuro’s secretary asking what I shoul do re a follow up appointment for my scan results and this is what she (rather shortly!) replied:

letter for results was sent out yesterday to your gp, there is no mention of a follow up appointment

should be with your gp in a few days


I think this probably means the scans were clear and that he has discharged me???

If so this is my worst nightmare seems to be coming true!!!

To be just left like this would be devastating to be honest!!!

I’m in tears - I don’t think I can cope anymore 8(((

You have had hell of alot going on in a short space of time…and most of it has been in circles by the look of it.

Get on the phone and book your gp appt with the one you like best,as its likely to take a few days to get one.

Do yourself a list of what each consultant has told you you have got,and when the gp tells you the latest scan results ask him so with all of this put together where does it leave me?

What is my dx and if you havent got a reason for all of my symptoms,why is my life being ruined by all these problems and what are you going to do about it.

Are you still trying to do your return to work as I’m sure you can’t be ready for it now.


Pip xxx I’m back in work - working from home most of the time - just waiting for a dx so I can get some help - and now this!!!

To be honest after reading that e mail - and reading between the lines - I feel I’m about to have a TOTAL nervous breakdown - whatever that is!!!

I just feel like crawling under a stone and giving up!!! xxxxx

There is no harm in doing that---- but only tonight is allowed, because you are the first to say youve got to keep fighting to get yourself listened to

I can only reiterate what I put in my last post.

Have you got someone you can have a glass or two with tonight to rant and rave about how bad this all is,and of course chocolate is law in these kind of situations

I really feel for you .


Hi Jen I’m sorry you are having such a bad time! I know it is like being on a merry go round. I agree with Pip, you need to sit down and make a list of your symptoms and each test you have had and the results you have been given from each different specialist. Go to the GP and get some answers, try your best to be assertive. I know this is hard. I know the GP may not have the answers but he or she may be able to explain what each result means. And by eliminating something, what the next avenue of investigation may be. Keep your chin up if you want to PM me for a rant feel free Ppx

You have been messed about so much recently I’m surprised you still know which way is up. You can handle this just as you have handled all the other things that have been thrown at you as well as helping us on here.

Can you email the secretary or GP surgery and ask for a copy to be emailed to you?

Pips right about the chocolate, we should get it on prescription.

Take care hunni


I’m sorry you feel so bad Jen and I really understand why. Pip has given you really sound advice re: the GP. Go for it. You know that you will keep going and getting on with it because that is what we all do. You are entitled to a massive moan and rant. Everyone needs that but tomorrow is a new day and hopefully things will not feel so bleak! Keep fighting girl, you will get there eventually! Thinking of you, Teresa xx

Thanks for the support all xxx

I just don’t know where to turn tonight x hubby is away and I don’t feel I can talk to anyone else but you lot! I’m so fed up of feeling ill - and although I’m better than I have been over the last few months I’m far from being well x

Looking back now I feel like I must have imagined it all - exaggerated it and overeacted!!

All the painful stiffness, the electric shocks round my middle and down my back, the horrible painful hug, the numbness up my leg and in my thighs, the burning sensation, the heat intolerance/altered perception, the blurred vision, muscle twitches, spectacular fasciculations, cramps & spasms, bladder problems, horrendous fatigue that had me sleeping 4-6 hours a day - was it all real??? Or imagined???

A lot of the symptoms have gone now & I’m left with some stiffness, fatigue, not being able to walk far without pain, not feeling my bladder at all and the odd twitches & of course the vision loss that is now glaucoma.

Maybe I imagined the doctors saying it has nothing to do with my previous spinal injuries - that it’s neurological - maybe I imagined the neuro surgeon and 2 GP’s saying I’ve got hypereflexia with sustained clonus plus plus plus and a positive Babinski response - maybe my pituitary gland isn’t enlarged and if it is maybe I’ve just naturally got an XXL one!!

I keep thinking maybe I should put it all behind me & give up chasing a diagnosis - and if it comes back wth a vengeance - like it has before several times - maybe I should just ‘put up & shut up’!

It’s just not worth feeling like this! Like I’m a whingeing hypochondriac!!!

It’s really affecting my mental health now and I don’t want to go down that road!

I also don’t know what to do about work - they are going to think I’m some kind of nutter who has made such a fuss about nothing!

So sorry all xxx I just feel like I’ve hit a brick wall head on and have nobody to turn to - nowhere to go next!

No plan B!!!

I’ll get over this I know - but that’s how I’m feeling right at this moment!!! xxxjenxxx

Oh Jen

You’ve been through so much just lately, I’m not surprised you feel like this - being let down by the medics we turn to for help makes us feel there’s no way out anymore!

Don’t give up with seeing your Neuro 'though. Although I’m waiting for results of an MRI scan, my Neuro never gave me a follow-up appointment either. He said that he’s only allowed a certain number of follow-ups by the hospital management.

Apparently the thing to do now is that if you have further flare-ups or things get generally worse, you must ask your GP to refer you to your Neuro again - that’s what I was told.

Don’t let them fob you off Jen - your health and life are worth more than that. I’ve been down the road of “it’s all in my head then”, but in reality you know that this is absolutely not true - and we know it on here too. One of your Consultants must give you a proper answer soon.

Hang in there - don’t feel alone in it 'though - come on here and keep letting us know how you are. We care & we’re all in this together.

Sending lots of (((hugs)))

Bren x

Ditto what bren said ((((hugs)))) F.xx

Thanks Bren x My friend just told me off for jumping to conclusions and reading ‘negatives’ into the e mail

She said it could also mean that instead of the scans being ‘clear’ there could be something that has shown up that would explain ALL my problems and that the neuro may not want to see me again but is referring me to someone who CAN help me!

Here’s hoping!!! xxxjenxxxx

Thanks Frank xxx

Hi guys!

I can’t get to see my favourite GP until 9th July as she is away so I’ve asked the neuro secretary to e mail me a copy of the letter to save me worrying.

Is there any reason why she can’t do this??? xxjenxxx

I can understand where you are comming from Jen. I don’t think there are many of us on here that have at some point thought we have imagined our symptoms. But scans, enlarged glands, absent or brisk reflexes the list could go on and on can not be faked or imagined! We doubt our selfs because we want and need answers. Sometimes they are not easy to find, but keep going Jen, you will find the right answer but it may take some time, but it has to be the right answer and dx to your individual set of problems. Sorry for a ramble had a vodka! Ppx

Oh No Jen

You’re not a hypochondriac. I’ve gone through the self doubt faze myself. - particulalry when things have improved you doubt yourself and think was that really real. I always look back to the symptom diary I wrote those first few weeks I had symptoms and I realise those problems were very real even if they have imporved now.

Prepare yourself in case it is a discharge and off you go but as the others have said there is a also a chance it may not be so.

Hang in there Jen. If you aren’t going to be the ambassador for your own health then who will be. It’s tough and testing and sometimes all you want to do is shout scream and cry because no ones listening or helping or giving you an answer.

But don’t give up.



Thanks all for your support - it gets you through eh!! xxx

I have cheered up a bit now!!

Onwards & upwards!


How are you feeling today?


hi I know how you feel I have been through the same to be told its my weight need to exercise more ect ect was not happy at basicaly being told I was fat and lazy even though I like you worked,cycled everywhere, looked after my family it didnt explain how my balance went , when I climed stairs It was like I had run a marathon how my legs didnt want to work how when i moved my neck forward my arms went num and tingley ect ect . Im hopefully on the last leg of my dx had all mris lumbar emg ect . I said to my partner if this dosent come back showing up anything I think I will end up going mental or either going for part in eastenders cause i must be a beep good actress !!! or not depending on your oppion of eastenders !!! but joking apart you have got to keep smiling think of something that made you laugh and try keep that at the back of your mind and when you feel really down remember it I hope that will help its what I do and it helps most times . Sorry if this seems to be about me more than you but I know this might sound a bit bad but I was glad to read there are more like you and me in limbo as they call it Be strong I know its easier said than done but you will get there and if all else fails CHOCOLATE !!! . love & hugs p.s this is a fab site and everything people write always helps in one way or another even if its just a simple hug xx

Mmmmmmm chocalate.

Hope your feeling better today. Did the neuro secretary e mail you a copy of the letter ?