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So fed up I could cry!

I’m so fed up I could cry! Been having an increase in symptoms over last few weeks. Saw GP at beginning of the week who told me to return if symptoms continued…well have tried to make an appointment for the last 3 days…can’t get one (even though there is a message on the receptionist screen that I need to see a GP) So out of desperation I telephoned neuros secretary, my neuro secretary response was “dr x is away for a least 6 months, maybe longer, and another consultant can’t see you as all booked with their own patients, so go back to your GP and get them to writ to us to bring your appointment forward” I have reached the end of my teather just a call from one would have done! I work for the so@@ing trust, and still get no where! I have now booked a private appointment in another hospital. I feel my life has changed and need some answers. I did have a Dx of MS by one consultant, only to have it changed, when he left and I was taken over by new dr (who is NOT a consultant) . I am going to do a list of symptoms including dates ect to take with me, and also copies of MRI reports which clearly speak of lesions in the brain, and demyelination. Any other advice? Sorry to ramble just soooooooo fed up, and in pain. Ppx

Hi Pollyp

I am so sorry you are having a rubbish time of it all. Does your GP surgery do sit and wait appointments? I have sat at the doctors for many hours recently and finally found one of the GPs in the practise who actually listened to me. You seem to be going round in circles and that must be stressful too. And all this on top of symptoms and a possible MS diagnosis.

Please tell your doctors you NEED to be seen today as it cannot wait any longer. Maybe even go to an out of hours doctors later tonight or tomorrow? There is no need for any one to be in pain in this day and age surely.

I really hope you get things sorted Pollyp and please let me know how you get on xx

I’m so sorry you are being treated like this, you shouldn’t be left to suffer. We have a walk in centre here that is nothing to do with our GP, it’s for anyone. I hope you get someone to help you soon. Take care Xx

Oh no Polly! Is it your eye and face thats flared up again?

That’s terrible. I’ve also learned that working for the trust you’re seen in doesn’t really get you much advantage. I can’t wait for my second opinion now.

6 months is not good enough. Is there not an MS nurse that they can put you in touch with. Whats happened to all the other patients for this doctor who is away for 6 months - this sounds very strange!

Hope you get somewhere privately Polly. Maybe put a complaint through pals about the situation with your neuro - it really isn’t on. In terms of your GP if you’re well enough go in and say you want to be seen. When my first episode started I said I wasn’t going to go home and wanted to be seen. They sent me home with a time to come back in the end :-). Really hope you feel better soon. PM me if you want to chat.

Reemz

X

Thanks pm64 and Nikki I have now got an appointment with triage nurse for later today. Pm64 unfortunately there is not a sit and wait service in the health centre. Tring out of hours is a brilliant idea! I will do that next time! Nikki there are no walk in centres around here, shame really as I feel this area would benefit from one. Thank you both for your kind word and support Ppx

[quote=“Gokr”]

Oh no Polly! Is it your eye and face thats flared up again?

That’s terrible. I’ve also learned that working for the trust you’re seen in doesn’t really get you much advantage. I can’t wait for my second opinion now.

6 months is not good enough. Is there not an MS nurse that they can put you in touch with. Whats happened to all the other patients for this doctor who is away for 6 months - this sounds very strange!

Hope you get somewhere privately Polly. Maybe put a complaint through pals about the situation with your neuro - it really isn’t on. In terms of your GP if you’re well enough go in and say you want to be seen. When my first episode started I said I wasn’t going to go home and wanted to be seen. They sent me home with a time to come back in the end :-). Really hope you feel better soon. PM me if you want to chat.

Reemz

X

[/quote] Thanks Reemz I really think at times it can be a disadvantage working and seeing a doctor in the same trust, I feel you see you as the coping professional you are and not a patient with symptoms and concerns. I am going to put a complaint into PALs I just do not think it is good enough, other patients must be affected to, surly it is the neurologys department duty of care to patients to get a locum? It’s the burning pain in my legs, and slicing stabbing pains in ribs that’s causing problems now, had a couple of falls too, but no worries all that can wait till neuro comes back! LOL. When are you getting your second opinion? And is it at a different hospital? Let me know how you get on. Ppx

The main piece of advice I can offer is to be very calm and not be angry about the way you’ve been treated so far - you never know, the neuro who’s away for 6 months may be the private neuro’s best mate!

Good luck!

Karen x

Hope they get something sorted for you,and dont forget to keep referring to your list as they often focus on one thing and ignore everything else.

Make sure you keep going back to it until all your things have been covered to your satisfaction.

Take care

Pip

[quote=“rizzo”]

The main piece of advice I can offer is to be very calm and not be angry about the way you’ve been treated so far - you never know, the neuro who’s away for 6 months may be the private neuro’s best mate!

Good luck!

Karen x

[/quote] LOLKaren, that’s a good point! I can see me having a moan, only for new neuro to say that’s my wife! Thanks for your reply. Ppx

[quote=“pip”]

Hope they get something sorted for you,and dont forget to keep referring to your list as they often focus on one thing and ignore everything else.

Make sure you keep going back to it until all your things have been covered to your satisfaction.

Take care

Pip

[/quote] Thank you Pip I will defo take a list…keeping focused is another matter, but I will try. I hope as I am paying it will help me be more assertive and get some answers. So brain muddled at the mo, so hope I can be clear and concise Thanks foe reply Ppx

Hello all Just an. Up date realy and to ask a quick question… GP telephoned this morning to speak to me about what I wanted in the referral letter to the neuro who I have booked an appointment with (privately ) We were discussing my results of MRIs and letters he has recived from neuros in the last year or so. Well it would seem when I had LP done last Feburary they did not test the CSF for O Bands, is there any other way to test the CSF for MS? It seem strange that this was not done. Thanks Guys n Gals Ppx

Hi Pollyp xxx So sorry you are being messed around! Very strange re the LP - I thought that was the whole point of it!!

Some of us seem to have a catalogue of blips & mistakes!! To be honest the worst thing for me at the moment is not trusting that things have been done properly - mainly because I’m from pillar to post and the right hand doesn’t seem to even know that the left hand exists in my case!!

I still haven’t managed to get my prescription for simple glaucoma drops! I was supposed to start them 10 days ago but there seems to be problems in communication between the surgery, pharmacist & hospital! I’ll probably end up with horse eye drops at this rate & start whinneying!!

Jokes aside - I so hope it all pans out for you soon xxxjenxxx

[quote=“Kizzydane”]

Hi Pollyp xxx So sorry you are being messed around! Very strange re the LP - I thought that was the whole point of it!!

Some of us seem to have a catalogue of blips & mistakes!! To be honest the worst thing for me at the moment is not trusting that things have been done properly - mainly because I’m from pillar to post and the right hand doesn’t seem to even know that the left hand exists in my case!!

I still haven’t managed to get my prescription for simple glaucoma drops! I was supposed to start them 10 days ago but there seems to be problems in communication between the surgery, pharmacist & hospital! I’ll probably end up with horse eye drops at this rate & start whinneying!!

Jokes aside - I so hope it all pans out for you soon xxxjenxxx

[/quote] He he Jen Maybe if we were horses we may get better treatment! I’d go the vets! Im with you I thought the whole point of the LP was to test for O bands, even the GP seems bamboozled by this! Still I hope I may have a clearer picture when I see doc privately. Like I said to GP today I was told could be MS or something else of neurological origin, but get on with it. But for me this is concerning, what if it something else that is heredatory? I have got two kiddies to think of. I need some answers for their sake as well as mine. I know I may still not get the answer but at least I would have tried. Phew I can feel myself going into a rant so best stop. Good luck getting your eye drops. Ppx

Eww! It’s frustrating! For me it could still be other things I suppose - although they’ve been ruling things out for a very long time! and the only thing that seems to fit is MS or maybe bubonic plague!

I just got my drops! and lo and behold I have a silver lining for once!!!

Amongst the usual long list of side effects eg sore eyes, allergic reaction, dry eyes etc is…

…darkening, thikening and lengthening of eyelashes!!!

YESSSS - BONUS!!! xxxjenxxx

I’m sorry you’re being treated like this, I hope everything will get sorted soon big hugs

xx

[quote=“Juleslovesmusicals”]

I’m sorry you’re being treated like this, I hope everything will get sorted soon big hugs

xx

[/quote] Thanks Jules I know your having a hard time too, so it means a lot that you have replied. Good luck to you too sweet Ppx ((((((hugs))))))

No worries Polly, i don’t think its as hard as yours by the sound of it :frowning: i’m gonna give the forum a break for a little while til i get my results,it just makes me worry more being here, my silly over-active imagination, but i’ll be back soon more hugs

xx