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Arrrgh?! So fed up.

Dear All, just letting off steam. Soz

My symptoms mean that the pins and needles and numbness never abates. I feel as though I have been punched in the face and my nose is freezing. Pains - yuck. Today I tried to keep busy, but I feel dizzy and I feel as though I am wading through thick mud.

I know that I am dragging my family through it. MS is all that I can focus on, because I feel it all the time. Scared that family and friends will get bored. Scared that husband will leave. What good is in it for him?

Sorry. Just fed up.

It seems to me that people often get MS at the time in life when they are the grownups - maybe with children to care for, maybe with elderly relatives to care for - certainly seeing themselves as independent adults in the world whose role in life is to help others. The last thing you feel like is a person who needs help, and understanding, and patience (if you will excuse the expression) and a bit of slack cut.

And then - guess what? - MS arrives and bang go a lot of the assumptions we make about who we are in the world.

Look: your family care about you. It’s not a one way street, with all the caring being your job. This is hard for them too, no question, you are quite right about that. No one selected this particular option from the menu - least of all you. Just try as best you can to help each other through as you all try to get your bearings.

Alison

You is what you is. You didn’t ask for this, you didn’t cause it. Don’t let MS dominate all you are, your still you, but a bit different. Family won’t stop loving you, friends wont (if their good 1s) it’s a horrible, horrible entity, but you are who you are, MS or not. It’s not a badge, it’s a condition, a s**t 1 granted, but you are in there, don’t let it dictate who you are, it will take no prisoners, be you, MS is a nasty piece of work, do what you can, if not we are here, those that are ‘in your boat’ so to speak, 1 for all & all that Tracey xx

Hi patience, I guess that you`ve chosen that username as a bit tongue in cheek, eh?

Now let me ask…have you been diagnosed yet? It either isnt clear in your post, or I`m being a bit thick!

I often wonder if folk are bored with me …but I try not to bang on about being disabled.

But after 20 years, I think they forget sometimes or think it doesn`t affect me anymore.

Im in a wheelie full time, but it may look to the others that half my body isnt human, its wheelchair!!!

being like this, we sometimes feel undervalued, unloved, just tolerated.

I know I do by my lot…unless it`s me overthinking…could be

could this be you too?

pollsx

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Dear Polls, yes over thinking and letting off steam and yes, Patience!

Of course I try to weigh it all up and I do completely know that so many have it worse than me…it’s just I can’t stop thinking about the uncertainty of it all. It seems such a lot to take on. And with my current symptoms I can’t see me returning to work just yet…arrrgh.

I have been diagnosed by a private neurologist who prescribed steroids, but when I met the NHS he said that he had forgotten to get the images so will scan again. He said in the meantime, keep a diary (ten weeks seems like an age). He said I should put up with the symptoms or return to the doctor if I need advice…(but my doctor knows very little i.e. He refused to give me the steroids because they were too strong?). Putting up with the symptoms is a pain because they are painful, make me boring, make me drive like a child and fall over in the supermarket etc. I try to pretend that it is all exactly the same as before, I guess, because I don’t want to ruin things for the family.

I am sure that things will be a rollercoaster, some days good and some bad. Just for now it is a lonely place.

Thank god for this forum and for people like you Polls. Again thank you x

Thank you. I love your strength. Warmest x

Dear Alison, yes thank you. It is a lot to take on, but I know from this forum and from messages like yours, there is a way through. Warmest x

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Patience

Have you at least been given the contact details for the local MS nurse? It seems so unfair that you tried to cut your waiting time by going private, were diagnosed, then have to go through all the waiting for the NHS anyway.

It’s like being not in limbo exactly, because you know what’s wrong, but more like suspended in mid air while you wait for the NHS to get a move on and for your GP to get a lesson in how to treat an MS relapse.

If you had an MS nurse, he/she could contact your GP and explain about high dose steroids.

Alternatively, do you have any letters or a report or anything from the private neuro? Generally, whenever I’ve seen anyone, even outside of the NHS, they will write a letter to my GP into which I am copied. I don’t really understand why this didn’t happen. Can you go back to the private practice and ask for something in writing which explains the testing you’ve had, the diagnosis he came to after considering the test results and the prescription he gave you?

Sue