doctors/people/ms c**p!

[vertigofalling]

Sorry to bug you all with my rubbish but hopefully you don't mind! Hope you are well and life's treating you kindly.

 

Firstly, my doctors are driving me insane. Firstly they've taken two years to get to the point where I am diagnosed... I think?! Lol they told me over the phone. But have done nothing about it. So I call my doctor today as my eyes are playing up, last week it was my face its constantly my legs and I dunno maybe my patience is a bit short. I've lost my job recently due to being forgetful and tired. . Yeah. And he says to me "maybe you need to see your neurologist, there's not a great deal we can do" surely they can't just do that? I'm just kinda left to deal with this no help no pain relief nothing?

OK so then I call my sister to tell her and she tells me that I'm making a fuss over nothing... I just need to get out more and I'm basically crazy.

I have blown my fuse. What is up with people? My eyes are flashing my legs feel like they are made of flaming concrete... and there's nothing anyone can do and I'm crazy??? Really.

Sorry for the rant I just can't get my head around small minded idiots. I can't cope with this on my own. I went to sleep last night hoping I wouldn't wake. I got kids I can't feel so stupidly all the time. Has anyone else had these issues with Drs? Thank you& sorry for wasting your time. Just don't know where else to turn.

Luci xx

[Crafty Cow]

Hi luci,

 

So sorry to hear you are having a hard time, especially after finding out in a matter of fact way, that is awful!

 

The problem with ms is that unless they actually know someone who has suffered for years with it and what havoc it can cause, no one really has full understanding of it. I have to hold my hands up, I am a qualified nurse, and I wasn't aware of a lot of what it entails, so I was shocked when certain symtoms arose. The problem is that ignorance can be put across in a brush it under the carpet way, or an in your face, snap out of it kind of way. Unfortunately for you, it sounds as though your sister had fallen into the latter category. Equally, she may be in a state of shock too, and trying to get her head round something which means that her sister has something that is devastating, but because she is in denial, isn't at the stage where she will read or accept what ms involves.

 

As far as doctors are concerned, I am not surprised you feel so frustrated and let down, the least they can do is try and get you in to see a neuro ASAP, given the fact that you seem to have been brushed under every possible carpet around the medical system. If I were you, I would go back, explain that you are not happy with the way you have been treated, and that there must be something proactive they can do, such as call the neuro secretary and ask for an urgent appointment. You could also speak to the secretary too and explain the situation. I would also contact the ms nurses, even if ine hasn't been assigned to you I a sure they will be more than happy to help you, as they know how to play the system and work in close contact with the neuros and their secretary.

 

Sometimes we feel guilty about having such thoughts as not waking up, especially when we have children, but that in itself brings added pressures to everyday life, running around after them. If it is possible, depending on their ages, rope them in to doing the chores, my youngest is three and thankfully he is now at an age where he wants to help. So when sorting the laundry, I sit down and hand it out to the kids to go and out in their respective drawers. Accept any outside help whenever possible, and be kind to yourself. It's been a shocking and life changing few weeks for you, a lot to come to terms with, and that takes time.

 

Take care.

 

Much love

 

Sam xxx

[lala]

Hi Luci

Firstly you are not wasting anyone's time here, this is what the forum is for :-)

 

I'm so sorry to hear that you have been treated so badly by your GP. I would be inclined to put in a complaint (maybe when your feeling better though?) I think the trouble with gps is they know squat about neurology, and are afraid to do the wrong thing for their patients. That being said, a dx over the phone and turning you away empty handed when you ask for help, is far from good practise.

 

Are you under the care of a neuro or ms nurse? If you are I suggest you phone them, explain what's been happening and try and get yourself into see them. There are a lot of meds available to treat the symptoms of ms, no reason you shouldn't have access to them. If all else fails you could go to a&e, not the ideal solution but will get you seen quickly.

 

The fact you are struggling with so much right now, means it's understandable that you are feeling the way you are. Any one of the things you mention would be too much for most people! Try to be kind to yourself, you are going through a lot, you need it :)

 

I found after my own dx that friends and some family found it hard to accept my dx, so they went in to a form of denial so they didn't have to deal. Do not let them drag you down, they will come around once they have processed things.

But Right now you need to focus on you, your children and getting better. Get on the phone, call the neuro or the secretary. Let us know how u get on?

 

HTH

Laura xx

[Mal]

As Laura says get on to your neuro's secretary , you should have had

an appointment before now ! you should have been giving a ms nurse specialist too!

 

as for GP' S , my optician said to me this morning "what is your GP like ?"

i just had to look at her and she said ohooooo!

 

Mal x

[Hezza]

Luci,

Please don't apologise - you aren't bugging anyone. A major reason why this forum exists to support us all when we need it and I'm sure many can identify with your situation.

 

You've already been given some good advice and there's not a lot I can add.

 

Thinking about your issue with your GP and getting treatment for your symptoms. Sometimes GPs simply don't know how to treat us and when there are several symptoms they don't know where to start. Maybe picking the symptom that is causing you most trouble at the moment would help - so if it is pain and normal pain killers aren't working it could be Neuropathic pain so you could then ask your GP for something to help with that.

 

You might find that once the pain is under control other things will feel better too - once my neuropathic pain was managed my fatigue improved because I was sleeping better.

 

As for your sister I agree with Laura, sometimes it can be our loved ones who seem to understand the least. When you're feeling stronger you can have a look for some of the free information leaflets available from the MS Trust and MS Society that help to explain MS and all that it entails. You might also find the Spoon Theory helps to explain it too - personally I love it - http://ms-people.com/forum/topic/3645-the-spoon-theory/

 

For now be gentle on yourself. Delegate what you can and rest as much as possible. Hopefully you will get some decent support and things will be brighter soon.

 

[vertigofalling]

Thank you for you lovely kind words. They mean more to me than anything right now. I honestly have tears from reading your replies.

 

My doctor called me back and told me that I need to be seen. He actually listened to me, my anger and my issues. He sorted it and has referred me to an opthalmologist and a different neurologist (my previous one reported I was "drunk" I don't drink... my words were just slurred and I couldn't put one foot in front of the other.. nothing like a man who is a brain and ms expert to not understand.) And has given me steroids to stop the optic neuritis. He is shocked for me, and appalled. So I am feeling slightly more positive.

 

Regarding my sister... she is such a doughnut, I can't get my head around it all. She just doesn't help. All of this added together just seems to be overwhelming. I hate ms I hate what it has done to my life. But, one day I'll come to terms with it.

 

Thank you for listening and being so supportive. I really do appreciate it.

Luci xx

[lala]

Really pleased to hear your feeling a bit more positive and the GP has sorted you out with some steroids. Hopefully things will get better from here on in. Look after yourself and remember the forum will always listen :-) x