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what do i do?

ok here goes, as you know i sent a urine sample to the drs for them to send it off to check for infections before the ms nurse sent me for a bladder scan, the urine sample got lost, they told me to get another form from my ms nurse so i can do it again, i called the ms nurse, told him what happened and what they said and asked if another form can be sent out, he sounded rather p’d off that i asked and so far its been a few weeks and nothing, considering i got the impression he was p’d off with me for asking then i cant exactly call again and ask for it to get sent out as i havent had it yet…so no bladder scan to help me get the toilet probs i have sorted. i was supposed to have iv steroids but cant as im terrified of needles, so the ms nurse said he wants to get in contact with my dr to get me on tablet steroids and he will let me know what the dr said…nothing so far, ive been on a crutch since oct last year, had a good day yesterday that i didnt need it, but today my legs were hurting like hell that i took tramadol to help, my right eye feels like its being ripped out and pushed into the back of my head, so now im stuck with no help and feeling like i cant call my ms nurse up for help incase i p,iss him off by asking, im taking a change of clothes with me when i go out as i cant stop things when i have a accident, i called the dr’s to see if i can get the steroids sorted myself and the bladder scan, but got told that i had to go through the ms nurse, i cant get refered to the continence clinic unless its through the ms nurse, so now im stuck having accidents and cant do nothing about it, and stuck needing steroids but cannot get them, what the hell am i supposed to do now?

Look, why can’t you just call the nurse? It is his JOB! It doesn’t matter if he sounded p’d off last time - maybe you just caught him on a bad day? It’s still his JOB! You can’t just avoid someone for the rest of both your lives, because he sounded p’d off ONCE.

If you try the nurse again, but still can’t get anywhere, you will have to go back to the doctor yet again, and explain that route isn’t working, and ask them to escalate. But at least try first.

I’m pretty sure it’s rubbish that you can only be referred to continence nurses by the MS nurse, by the way. You can self-refer for this: there are ads on telly about it all the time. Google “continence advisory service” for your area.

Tina

look im only going by what ive been told by the dr and the impressions ive had so far, im still pretty new to all this, so i dont want to go bugging people ok, i dont know whats rubbish and whats not when a dr tells me something and im not exactly going to tell a dr he’s lying now am i when i dont know myself

Tina’s right - just call the nurse. What have you got to lose? Your health is suffering so call him.

hi vicki,

i am feeling for you as hate feeling like i’m bothering people. but everyone is right, it is the ms nurse’s job to help you. if you can’t face calling him yourself, is there anyone that can do it on your behalf? or does he have an email address that you can send a polite note to?

i’m sure what has been suggested previously may be true, that you just caught him on a bad day. if you start the call with “i’m really sorry to bother you but…” i’m sure he will be understanding. you have to put yourself first doll as it’s not fair that you’re going through this.

good luck xxx

:-/ me and my double posting!!!

Please contact your MS nurse again. It’s unfortunate the form & sample got lost but you should not have to stress and worry because of someone else’s carelessness. I also think if the nurse is not more supportive this time you should speak to his superior. You need a helpful and positive source to call on, especially if you’re new to all this, not someone you find unapproachable. That’s the job of an MS nurse, bad day or not. Hope it goes well this time. Ann

I agree with the other - call your MS nurse again - or ask someone to do it for you. You can definetly refer yourself to continence nurse - I did…

Carol

Please call the m.s nurse. He gets paid to do a job so bad day or not call him. He will have to get over it… Your health is too.important to sacrifice. Your GP also might be able to sort steroids…its always been my GP who prescribed them for me. Also it might be worth contacting your Neuros secretary if your getting nowhere. Good luck…get it sorted hun or your gonna stress yourself out too much and become worse. Stress can be a trigger remember x

This is one of those WTF times
If I want a urine test, I drop a sample off at my GP’s surgery before lunch, and one of the nurses does the test before 2pm.
I did once have a receptionist give me a whole load of cr@p about it having to be sent away, and it would take 5 working days, etc, etc, so I dropped it off on a morning when I knew that she would not be there.

The test itself, takes less than 5 minutes. Sounds like a clear case of “someone else’s job” to me. Try a phonecall to the surgery and check if they run the same system.

Geoff

Bit confused here… You have a query UTI? So go to the GP and get it checked. You don’t need your MS Nurse for a routine GP thing like that. Your GP will have the forms to send it off to the path lab. How do you think people without MS get their wee tested???

And your GP can organise the steroids too. And you CAN self refer to a continence nurse and I am sure your GP will help you there too for the bladder scan.

But you will need the assistance of your MS Nurse at some stage so I agree with the others… whether he was in a grumpy mood or not you still need to have contact with him so stop being such a baby and just give him a call. Yes, he might still be grumpy. For all we know he might be a crotchety, foul tempered ole git… so what? He still has a job to do and you will still need his services from time to time. And he might be a perfectly nice bloke who you just caught in a bad moment that other time. Stop being so precious and start looking after yourself. You are letting your health suffer because of the “nasty MS Nurse”. Sorry, not good eough. Take responsibility for your own life and for your own health and DO something about it.

B

I’m a bit concerned at the negativity of some posts and the way they come across…might be me reading them wrong but some do come across as if telling you off. I feel pan burner your not in a great place emotionally, mentally or physically. I remember the days when I’d just been diagnosed…it affected my confidence greatly, I weren’t sure who I was meant to contact and at what point it was okay to contact. Having never been in a world around a condition like this at that point I felt lost almost.i didn’t know whether there was a protocol etc and if what was happening or going to happen was all part and parcel, which to a certain extent it is but I now know there are things that can be done to help. Whilst yes we do have to take responsibility for our own life sometimes its hard to acknowledge the difficulties and see what we have to do as we are so preoccupied about how we feel, the way we are treated etc etc. and not wanting to feel like an inconvenience is a common feeling. It should be the m.s nurses job to make you feel comfortable to approach and this one clearly hasn’t. I’m lucky mine are very approachable, whilst they can take a while to return a call, two or three days they do contact and they are clear in an emergency to contact the GP. I feel pan burner you should contact the GP re the steroids, contact the nurse too but steroids, bladder scan and continence referral can be done by GP. I work in social services and I know you can refer yourself for a continence assessment but if your going to see the GP for the steroids you may be able to get a referral from him with a more urgent request on. That’s who we go through for urgent referrals for continence assessments in my work. Do contact the nurse too, maybe ask for another one…if you still get a negative response report this to the neuro secretary and request another nurse. They need to know if there is someone working for them who is actually making people feel much worse. We all have bad days at work but it shouldn’t be shown in our work especially this kind of work. I know I’m on the frontline working with many different service users and my job is to help them not make them feel worse! Please contact your GP hun. And people here are trying to help although I’m sure you may have viewed their posts in the wrong way…suppose that’s the trouble with writing, you cannot always tell how that post is meant to come over and this can be perceived in the wrong way just like texting. We’ve all been there, done that eh? X x x Sorry other people if I’ve perceived a couple of the posts as negative, I know you always have the best intentions for us msers :wink: I just didn’t want pan burner to feel any worse than she already does. Oh and pan burner, that’s a very unusual name?! :slight_smile:

I totally agree, I think the post directly after the panburner’s first post post was definitely out of order! Panburner, you are new to all this, we have all been there at some point, and you don’t want to annoy people or be a bother. But he is being paid to do a job, and evidently not doing it in the empathic way he SHOULD be doing it. I was would just bite the bullet or if you feel really uncomfortable, ask someone to do it for you who is less likely to feel so awkward. And guys, if you can’t be nice, don’t type!!!

There was absolutely nothing wrong with Anita’s post - it IS the MS nurse’s job.

Alternatively - ring your GP receptionist and inform them that you need your pee testing before you can commence steroids - if they lost the sample it’s up to them to organise another, I can’t understand why they asked you to get the MS nurse to send another request - your surgery lost the form, it’s their responsibility to sort the problem out.

Your GP can refer you to a continence advisor and in some areas you can self refer.

With any chronic, long term, health condition you need to get yourself in the driving seat - educate yourself, join a local patient group, ask your MS nurse about local MS groups. You can’t sit back and allow people to make decisions and take actions (or not) in respect of your health - you need to claim your power and ensure you get the treatment you need.

I agree, contact the nurse again, so what if he sounded p*ssed off, it is his job, it is a disgrace that you are left wondering what to do. But, do be polite and don’t go on about the last time you contacted him, just explain the situation as it is now. if you don’t feel confident enough to contact the nurse then go to your gp, the gp should be able to sort all this out for you. Btw, I agree with Anu’s reply, above, IMO there was nothing wrong with Tina’s post, the one directly below the original post. Cheryl:-)

I don’t think there’s anything wrong with the posts as such but its sometimes the way they come across in writing and when read by someone who may lack confidence and not be in a good place right now. We do need to take owness for ourselves and often fight for what we need however this does not come easy to everyone. It depends what type of person you are. Hope you are closer to sorting the problems hun x

PanBurner - did you call the nurse today? What happened?

[quote=“Anonymous”] I totally agree, I think the post directly after the panburner’s first post post was definitely out of order! …
And guys, if you can’t be nice, don’t type!!! [/quote]

Pot kettle black?! Telling someone that their post was out of order and not even having the courage to put your name on it?

Nothing wrong with Tina’s post that I can see. A lot wrong with yours!

I think that the form originally given by the ms nurse had specific tests detailed on it so maybe that’s why the gp specifically wanted the ms nurse to send another form so they know exactly what they are testing for. ( correct me if I’m wrong ). I agree with LISALOU that I think your confidence maybe low ( read some of your prev. posts, you seem to have an awful lot of additional stress to cope with, family etc. ) and that you may be feeling very sensitive to what and how people are saying things to you. Could be that you think the ms nurse was p***ed off but he really wasn’t, maybe he was just using a different tone of voice. Don’t be scared to contact him for anything regarding your ms, if you are suffering he must take steps to help you. I also agree with UPTUPY, keep the conversation short, polite and to the point but let him know what you would like him to do. I guarantee there’s always going to be someone who troubles him a lot more than you do!!! I’m lucky I’ve got a nice ms nurse, she tries to be helpful and she’s going to take my bloods tomorrow as the hospital phlebotomy dept.have lost them twice, ( which is quite worrying ) and my gp surgery told me I’ll have to wait 5 weeks to get one done from them as they are under too much pressure from the hospital…oh happy days. I’m still waiting to get started on Rebif but all the cafuffle over the bloods is delaying things. Anyway Panburner, you forge ahead, be brave, you owe it to yourself.

thanks for the replys, im not BEING A BABY, im struggling with a hell of alot at the moment and im not coping and i dont need bitch/y comments or people telling me off, i only asked what to do as i dont know myself, so thankyou for your comments, all i can say is i hope you dont get off like this with a newbie that asks a question