Diagnosed 20 years ago.

New diagnosis and before diagnosis
1

Im sorry to write all my issues on the forum,but I have no one to explain things to or ask for help…

After all the upset yesterday and the system let me down and reduced me to tears yet again.No help offered.

A woman called Jackie had rang me,she asked me a few questions but this all changed then and she was more concerned about the welfare of my child.Anyway I have decided NOT to ask for help if its going to cause all this upset and problems.I will wait until I see the Neuro then ask him for advice…

However she must of been reading my files and she mentioned I was diagnosed with MS twenty years ago.I was like HELLO I told the old GP and the new one it was on my files and if they read my files properly they would of seen it written there.

How can a doctor not listen to a patient,all this is so confusing to me.My body is changing,my life is changing,I dont remember simple tasks,I dont remember things that happened yesterday or last week…

All this is pritty frightening…

Im in pain all the time,my legs are numb again and vibrating.

I feel I am being pulled in all directions,getting no help in getting me mobile again.Im stuck at home unable to go out anywere.

I felt so ashamed of myself earlier,I was speaking to one of my daughters friends mother,I dont know her well at all.I was slurring my words and I felt so ashamed,she just looked at me as if to say freak.If it happened with someone I know well we would of laughed it off,I would of made a silly noise and pulled a face…

People make me ashamed of my illness…

Sorry for being a pain in the rear…

Gosh I usaly a happy bubbly person,I am the joker in the pack.Now I feel so low I have losy my fight,I cannot fight this anymore.All I want is help and its clear I am not getting any…

2

I am so sorry to hear that you are having such a rough time at the moment. But do ask for help, have you got a MS nurse, she should be able to advise you. Do not be ashamed of your illness, it’s not your fault and if other people don’t understand well they should be ashamed themselves. You could also ring the MS helpline as they are very good and would be able to advise you to go in which direction you should go. Whatever you do don’t give up, we are all here for you.

Take care.

Janet

3

I did ring the MS society and the woman said she didnt know were to tell me to get help.

Im on the waiting list to see the MS nurse and the OT,apparently there is a very long waiting list.

The way I walk makes me ashamed.Well no I am not ashamed it is other people who make me feel ashamed.

I will wait to see the MS nurse,OT,neuro and its called a waiting game…

Do other people have all these problems?

Do we have to fight the system every inch of the way?

A heroin addict can get DLA for having an addiction,an alcholic also gets DLA for having an addiction yet the ones with genuine illness and disabilities cannot get benefit or are being taken off there DLA…

See,now I will get angry at the system,maybe thats what I need to get my fight back…

4

Ahh thankyou Fred and you Janet.

Fred it is pritty scairy,just thinking about all the changes that I have had to make and am going to have to make.I dont know whats happening to my body.Things change from day to day,minute by minute…

My head is fuddled enough without extra stress being added to it.

I know I had problems over the years like painfull feet and legs and falling over due to spasms in my legs and weakness,the past three years have been hell.My old doctor just kept sending my for bloodtests that were coming back clear,new doctor sorted out further investigations.

It just very hard at the moment,Im so ill with it and feel trapped,I am sure things will start to look up soon.

Charlie,x

5

Whatever others think, it is not your fault that these things are happening to you. You have nothing to be ashamed of. If people look down on you, mentally return it ten-fold; they are the insensitive, ignorant person, not you!

Just a thought, but how many people have you told about your MS? If people knew, they wouldn’t make quick (wrong) judgements like “slurring words = drunk”. Anyone who knows about the MS and then looks at you in a bad way is only revealing their true colours - these are the freaks, if anyone is.

Have you tried writing to your MP about your DLA and getting help generally? You can email him/her, explain the situation and ask for their help. Some are really good at getting involved so you never know!

The woman who rang you - she may have seemed more concerned for your child, but that in itself is a way to get help for both of you. Anything that your daughter (am I remembering right that she’s a she and not a he?) has to do for you should be helped with whatever aids and maybe even people they can provide. That way you both win.

Please go and see your GP too. He/she could be making phone calls on your behalf to get the MS nurse and OT appointments brought forward.

I hope things start to get better very soon.

Karen x

6

Hi Jellybean,

I understand how you feel, I just put a post on here about my head being a ‘fog’ and it’s making me so upset.

I have to take walk my daughter to school every morning and I can’t cope with it, people asking me how I am and being all happy and chatty (as I used to be). I am just a miserable teary unhappy person now who just wants to be by myself.

I am going to my GP with all this on monday as I think I need some emotional help and some positive thinking. Maybe you ahould ask for the same?. I sure they should be able to help us cope with all this??

7

Firstly let me say Bless you Vicky.I surely know that fog feeling,unable to think properly,forgetfull,fuzzy all the time as do many of us,you are certainly not alone.Ive had the most terrible looks when taking my girl to school.People looking with utter disgust.

Vicky that teary feeling hits us all at times and drags us down,we have to fight this every day,we do not know what each day will bring.I will cry my tears and struggle all day,then when my girl comes home I put that big smile on my face and pretend all is well just for her.What we realy want to say when someone asks how we are is more like Ive had enough,what a stupid question to ask.But we grin and bare it and say Im fine…

Vicky you need a hug and someone who truley understands you and your condition.Dry those tears babe.x

I have told people I have MS but that still dont stop them looking at me in a wiered way or pointing fingers even walking away from me.If they understood MS they would or may think diffrently on how they treat MS suffers.Life is hard enough for us all without negativity and making us feel ashamed or uncomfortable about ourselves.

Ive even been called a junkie…Yup I am a heroin addict…

IDIOTS!!!

Anyway I had a letter from Social Services saying they would be intouch soon to make an appointment.

A Sarah phoned this moring who has now contacted my neuros office for them to get intouch with me and help me.

I crashed on the sofa today for nearly four hours,I woke with that muggy head feeling with my child trying to get in the house.Oh gosh…

But I will say this afternoon I felt a little more like me,wether its trippling the meds or the MS giving me a little respite I dont know,Im just happy I feel a little more me…

Tomorrow maybe another bad day,but hey at least I will of had a short break from this pain and unable to get around.

I am try peeps and thankyou all for your support,Im trying to get my fight back and everyone better watch out when I do.

Charlie,x