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Frustrated to the max!

Hey all

sorry I need to vent. Just saw my neuro this morning. I was calm collected and when he asked me whats been happening I'd written a list of main symptoms not to overwhelm him. I started with the worst - the pain to which he then said well I get pain you just need to ignore it and stretch etc etc I do YOGA to stretch I take 5 mins out every half hour at work to stretch!

Then he started going off on tangent so I said but I also have bowel and bladder problems (next on my list). He then said well I can put you on amytriptiline or other nasty stuff but do you want to take it - i said not if I can get away without but I'd like to know my options! He then said I think you're a pessimist you just need to ignore your symptoms becuase they're mild and get on with things. How dare he calls me a pessimist! I know my symptoms are relatively mild but its quiet difficult becasue they vary so much - its not fun  being in agony, then thinking you're going to pee yourself or then having to go to the loo 5 times in the space of a few hours. I'm trying to help myself so despite the fact I can't run I dance and do yoga and haven't had time off because of this. I constantly think I'm lucky that things aren't any worse, don't really tell my friends about my symtpoms, try and battle through tiredness and fatigue without complaining, I haven't even told my parents in the hope it'll go away  - how the hell am I pesimistic!

I then said well what has caused all this - he said well you have had an epsiode of 'inflammation' but we don't know what will happen yet we just need to monitor. I asked about LP's and EVP's because he had offered it last time but said he didn't think I needed, today he said it wouldn't make the diagnosis. He said it wouldn't make me want to put you on treatment. I said well what is the plan then - he said I've seen plenty of patients with your scans and most don't develop anything more but lets repeat your MRI's in a couple of months and have a review in a year to see what's happening and if things are changing, but if things get worse you can call or email me.

Grrr I'm just frustrated - I'm glad he's repeating my MRI to see if there are anymore lesions but his attitude stinks. I'm sorry I work in  healthcare so i completely understand about the waiting process - horrible though it is. But telling someone you're a pessimist and just ignore your symptoms and not even wanting to listen to them is not good. How does he know how I feel - is he getting the symptoms?

So annoyed I feel like crying - but I won't. So basically I've had a clinically isolated episode - we wait and watch.

Reemz

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Welcome(!) to the world of being under a neurologist's care letdown

There are good ones who do actually listen, but they are way too rare letdown

 

Being in agony is absolutely NOT a mild symptom. Neither is incontinence! Shame on him!

I do hope you try the amitriptyline. It can make a world of difference to pain. I vaguely remember that continence problems are contraindicated or something though - it would be worth checking that it is definitely OK for you to take it.

 

At least he said he'd send you for new MRI soon. Make sure and chase it up if you don't hear anything - paperwork has a habit of not being filed and/or going missing!

 

I hope you can try amitriptyline, and that it works brilliantly for you.

Karen x

Aww bless you xxx nightmare!!!! What a totally insensitive, patronising 'egg'!!!!!!! angry

I'm dreading my visit to the neuro because I've read of so many people having experiences like this! I think if he treats me like that - after all we go through with these horrible symptoms - I might find myself in a police cell!! I understand they probably see these symptoms all the time but for those who are actually experiencing them they are really horrible!! Persistant and daunting!!!

For example I can't believe how debilitating & distressing even a relatively minor thing like my constant eye twitching and spasming got after a few weeks! It eventually subsided after 2 months only for a constant fasciculation to start in my thigh muscle - these things are soooooo flippin hard to ignore!!!

Did you go on your own Reemz?

I've been debating whether to take my hubby with me or not (it means he loses a day's work & therefore pay). But after hearing your experience I think I will - as a witness ..........and to hold me back!!!!!!!! xxxxxjenxxxxx

Hey Jen

Thank you for your kind words. Yes it’s all so easy for the neuro to say - ignore and get on with it, but for us they are distressing things. One persons molehill is another mans mountain as I like to put it. Even more distressing if they’re affecting your ability to work or have a normal social life.

I didn’t take my partner with me on this occasion (I did on the last), but I was prepared for the neuro being not so nice after my last experience. Would I have taken him with me today now looking back? Maybe - it’s good to have someone there who knows you and sees whats happening to you day in day out - or to give you a hug. I was in the dilema that my partners just started a new job - so I decided to go alone on this occasion.

Not all doctors are bad though. I work with a few consultants that really are fantastic and take a considerable lot of time to listen to there patients so don’t let our experiences put you off.

Good luck for your neuro appointment Jen - let us know how it goes.

Reemz

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It would be nice to have a neuro that listen, Ive had 3 mri none with contract, the 1st was brain and upper spine, the 2rd was thoracic spine, the 3rd was supposed to be both ive just been informed it was only brain , over the last 3 yrs Ive deteriotated dramatically I m waiting for a wheelchair , Im having a carer twice a day, social worker is getting me a blue badge, Ive got all the symptoms most of us have, now my little fingers are bent over needing splints, my neck is being pulled over to the right, and bladder and bowels are shot, ive just changed gps and hopefully things will now get moving, Ive been refused dla as Im not ill enough[bloody joke] so at thr moment ive got a ? dx of cfs and fibro, and definate syringomyelia, I know how frustarted we all get , there are days I could scream the damn house down, I feel like poeple are playing with my life, Im tired of fighting for help

Oh Lally xxxx((hugs))xxx

I'm afraid I just don't understand how you can be so disabled with something and not know what is causing it!! Someone else said in a post that people tend to think that when you get ill....you get seen by the medics....then you get tested....then you get diagnosed....then you get treated... and all is well that ends well!!! 

This works when you have something they can easily identify but anything that is not the norm and does not conform seems to lead to them shrugging their shoulders and giving up looking for anything else - especially the rarer causes of ill health!!!

I'm learning fast though I can tell you!! I'm having a hard time explaining to people in work who instantly say "oh well, it can't be anything serious if you are having to wait" !!!!!!!!

MS or not - these things are disabling and whilst maybe not 'life threatening' in the technical sense they are certainly 'life threatening' in the quality of life sense!! xxxxjenxxxx

 

Hi Lally

I’m horrified at what you’ve been through. Can they not see what’s happening to you! We pay our taxes and those of us who can work do - so why is it that when we need help it’s not there. I work with patients and though I’m just a health professional I don’t treat patients like that (the neuro gave me 5 mins to talk about a condition that could effect my entire life - I spend an hour with an adult assessing and talking) and I’m completely mortified that there are some that do.

I’m so upset for you Lally, I don’t even know what to say to make it better. I hope your partner/family/friends - someone is giving you support. I hope things get moving now you have a new gp. It’s not right that so many of us have to just put up with things. I wish there was something that could be done so that less people had to get worse before someone took any notice.

Reemz

X

Hi Lidy

thank you for your comment. I will definitely make sure I get my gadolinium contrast MRI - my last one was :slight_smile: I love my job and theres some much I want to do so I’m not someone who will let an illness beat me I will try try and work round things and I’m quiet lucky my manager is fantastic. But it is hard and sometimes you do feel like you need a little cry when things get on top of you. When you see other normal people having to worry about normal things like - when will I have time to paint the kitchen, or what should I wear out? It does hit home that you’re not a normal 29 year old. I think that’s ok you can’t be 100% happy all the time everyday. I just wish neuros understood that and were more forthcoming with what help you can receive so you can feel supported and in control of your treatment options rather than playing a waiting game.

Reemz

all i can say is tank god for my social worker shes amwazing , shes got me the help, Ill travel along this trying to be dx for as long as i can , 3yrs ago I was a community carer, on call 24/7, now I need one, I got measured for a chair yesterday, on cried the whole time,sometimes I dont kow how i carry on, i can walk but its so painful,its one thing after another

I think that’s the hardest part. MS doesn’t kill you so it’s not a medical emergency but it certainly can severely impact your quality of life. A diagnosis doesn’t make it go away but it gives you some closure knowing that there is something wrong you weren’t just imagining those symptoms, it also gives you the right support and help and easier access to medications.

I’m so sorry that you’re having to go through what you are: it’s hard when you’ve led a full active life to have it all crumble. Someone should do a questionnaire to find out the journeys different patients go through to get a diagnosis. There needs to be a better standardised protocol to ensure everyone gets the same good quality of care to help them reach a diagnosis. It’s no good if Joe Bloggs in Cambridge gets his MRI/LP and EVP with contrast and then a repeat MRI in 3months when Jenny Bloggs in London has to fight to even get her MRI with contrast. Sorry for the rant - you can see I’m quiet passionate about this.

I’m so glad you have your social worker on your side and don’t forget you do have all of us

Reemz

X

Hi, I`m with you on the thinking that the neuro`s attitude stinks.

How dare he indeed, say those things to you.

Oh It makes me so mad and frustrated for you.

I am also in a very frustrating position myself.

Seen 13 neuros in as many years. My dx has gone from highly probable PPMS, to HSP, back to PPMS and now we`re wearing the SP, cause unknown label.

I`ve had enough of the numpties at my local hospital and am going to ask for a referral to a top guy at Leeds.

If he says I haven`t got MS, then I`ll accept it.........as long as those idiots stop messing me around.

luv Pollx

Hey Poll

thank you for your comment. It's so frustrating to get pushed from pillar to post. It's your life they're messing with!

I've calmed down after my appointment on friday (trying not to think about what he said)- getting myself stressed isn't going to help. Planning to have my MRI and see what the results are and then if I'm not happy get referred elsewhere.

In the mean time trying to find things to help myself. Maybe another visit to the osteopath or some acupuncture. Have a holiday in a week and a bit so some good distraction and tlc :-)

Hope you manage to get your referral to see the consultant in Leeds and it gives you some answers. Will be keeping my fingers crossed for you. Keep us updated.

Reemz

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