Tests

[Legs-alive]

After a lot of thought & talking to family, friends & on here I decided I no longer wanted any more tests doing in me. I’ve had tests for 9 nearly 10 years with nearly all of them coming back clear. The mri’s showed small changes & the anti gad always came back higher than normal. I was due to have another test done requested by the professor I’m under but when they rang me with a date another test had been added on that I knew nothing about, no discussion & no authorisation from myself. Even though I knew the all the tests were being done for my benefit It was the final straw where I felt like I’d finally lost control over my own body, Id started with anxiety, was constantly worried, stressed, snappy so I rang back & cancelled them. The secretary was extremely rude asking me did I realise just how long ppl had to wait for these tests doing making me feel even worse & even more guilty than I already did!

Yesterday I saw my consultant neurologist at st Luke’s in Bradford who I’ve bern seeing for around 7 years, as soon as I walked in I burst into tears & everything came out how I’d been feeling & didn’t want any more tests ect & he was absolutely wonderful! He said he’s surprised I’d gone on for as long as I had done & after I spoke & he listened to everything he said my feeling were perfectly natural & he was going to write to the professor & explain everything & that I’d now be taking a ‘holiday’ from Sheffield & any further tests. I’m now going to stay under my consultant & can return back to Sheffield when & if I decide to move forward again.

I’m sorry for such a long post but I wanted to let anyone else know who maybe feeling like I did that these feelings are perfectly normal & you won’t be pressured into doing anything you don’t want doing. I would have so loved to have read something like this & know no one would think any the less of me, so I’m just hoping by reading this it may help anyone else make the best decision for them.

[february]

Dear Legs-alive, You have every right to make a decision not to have any more testing and don't have to feel guilty about it! You must be pro-active in your own health-care! Kudos to you!!! My best to you..., ;o)

[Legs-alive in reply to february]

Thank you February, I feel much more positive & at ease now I’ve spoken up & felt heard 😊

[neta]

I wouldn't have had the guts although recently told some bored social worker thread the file rather than repeat for the nth time what I had. Hats off to you..N...

[Legs-alive in reply to neta]

dont let anyone pressure you into doing someone you don’t want to do. Your care won’t alter if you speak up, my consultant neurologist said to me the other day-sometimes Drs are so busy picking at things to try get answers they forget what it’s doing to the patient & it’s not until someone comes in, breaks down & tells them(like I did)

Please speak to them & explain how your feeling & don’t let anyone force you into doing anything. It’s your body & you know when you’ve reached your limit, tell them your not saying never- your saying not yet!

[neta in reply to Legs-alive]

My PT says I am way too servile to my neurologist. Its true, I treat drs, like gods..

[Legs-alive in reply to neta]

I think that is because we put all our hope & faith in them that they will get us better, after all isn’t that what Drs do? But unfortunately in cases like ours that are rare they simply don’t know enough about the condition or have the money & resources to find the treatment & cures for us😔

[neta in reply to Legs-alive]

u r right

[ConfusedAtaxian in reply to Legs-alive]

So, signed off before progression. I’m not the person she last saw. Disgusted I don’t even get a check-up once a year!

[Legs-alive in reply to ConfusedAtaxian]

Hi, I’m not sure who you mean? If it’s a gp, consultant neurologist at your local hospital or a professor at one of the specialist ataxia clinic but which everywhere I’d recommend that if it’s your gp your talking about then please go see another one & ask to be referred(or 2 a different one) of the above.

[ConfusedAtaxian in reply to Legs-alive]

It is the consultant neurologist I mean. No medical person wants to know. There is no group. I believe 1 other person in this town of around 29,000 has Ataxia. I was told the GP should check on me regularly but they don’t want to know either. Life has certainly changed!

[Legs-alive in reply to ConfusedAtaxian]

Have you spoken to your gp about been referred to a different neurologist or getting referred to an ataxia specialist clinic?

These are the details for ataxia uk helpline, they are really good & will be able to give you lots of really good advice & will be able to help you getting referred, please give them a ring & have a chat.

Ataxia UK (registered charity in England and Wales (number 1102391) and in Scotland number (SC040607).12 Broadbent Close, London N6 5JW. Helpline: 0845 644 0606

[Hidden]

I had to do similar on behalf of my son.

Firstly, we declined the muscle conductivity tests as I was worried they may have done more harm then good.

Then, some MRIs - when we were told they wanted to map his determination - I don't think I can cope with any more bad news.

This caused arguments on the family, but as there was no possible treatment on offer, then I just didn't want him to be hoping the tests alone would help. He is more fragile than me in terms of mental state and I didn't want both of us dealing with any more bad news.

[Legs-alive in reply to Hidden]

I can totally get where your coming from-for 9 nearly 10 years I’ve done every test they’ve asked of me including having 2 nerve biopsy’s because the lost the 1st one! Each time they planned a test I had all my hopes pinned on it in the hope that maybe just this once they’d find something out only to receive the soul destroying news of ‘ no sorry we can’t find anything so we’ll carry on as normal’ so then I’d attempt to come of my medication at home thinking I didn’t need it cos there’s nothing wrong with me to then be in agony with pain from the nerves to go back on it & once again start that circle until I felt like I was actually going crazy! Like you the last test they’d organised I simply could not face any more bad news & especially when they’d added another to the mix with no discussion with me about me, I felt like I had absolutely no control over my body any more & had to take it back to get back to a place I felt more in control again. I’m so glad you listened & did what you thought was best for son. My consultant neurologist has been fabulous & said this is something they see quite often I just wish someone had told me when I started at Sheffield that I didn’t HAVE to have them as I always felt that was what was expected of me. I have said I’m not saying never I’m saying not yet!

[KAWIKA]

You are lucky you are receiving good advice. I live on a small island in the Pacific. The nurologist will not even return my call.

Dave Kennedy

[Legs-alive in reply to KAWIKA]

Perhaps time to look for another one? I have had 2 consultant neurologists-the 1st sounding similar to yours!

[KAWIKA in reply to Legs-alive]

Thank you for the advice Legs-alive. However, he is the only neurologist on Kauai. But, I may be relocating to Oahu, which has 10 times the population.

[Happyfacexx]

Well done! Is always good to take back our own power, what difference does a label make anyway, once the curable types of ataxia have been ruled out, why not have a complete rest from those endless hospital trips, and as soon as they discover more curable types then you can start up the tests again if you want, I was in hospital once for 5 or 6 days with suspected viral meningitis and the doctors wanted to do a lumber puncture, I knew it was only for diagnosis and wouldn’t change my treatment in anyway so I declined, they weren’t happy but I certainly wasn’t going to have a large needle in my spine just to keep them happy, it was hard for me because I don’t like confrontation but I overcame by awkwardness.

[Legs-alive in reply to Happyfacexx]

Hi, yes that’s what I’m planning on having a rest from it all, as my consultant neurologist said-you’re having a holiday.

It’s so nice to read I’m not the only one that’s said no enough s is enough for now. This is why I wrote this post as when I was trying to decide what to do no one else really understood why! But it comes to a stage where we have to put ourselves 1st for a change & our own well being 😊

[tedjohnson]

Hi Legs-alive. What a lovely name!! A good sense of humour which we all need. I have done the same as you and the stress has gone. However in saying that I had a wonderful consultant at Frimley park Hospital and she said she would be pleased to see me at anytime so her door is ways open

Take care and be happy. Ted

[Legs-alive in reply to tedjohnson]

Gags yes I like my online name, I was always the first to see the best & funniest side of things. That’s fabulous news for you! My consultant neurologist has said he will continue to see me every 6 months I just won’t have to go to Sheffield & see the professor I am/was under. He is going to write to him & explain everything & tell him he will take over all my care for the time being until I decide IF & WHEN I want to return to Sheffield, I honestly feel so much more relaxed & at ease & like a massive weight has been lifted off me which can only be a good thing as anyone who suffers with ataxia will know, stress & illness only makes this a whole lot of our symptoms worse!

[Mariweena]

Hi! I could’ve written what you wrote ! After my CA diagnosis I said “Good! No more neurologists who have been irritating the crap out of me 🤬! Since there is no treatment and nobody knows what it is 🙄 I feel good about the fact that after almost a decade I finally have a diagnosis that makes sense. It sucks but now I know what to expect in my future 😐

[ConfusedAtaxian]

My GP referred me last year to another neurologist at another hospital but he cancelled the appointment I had saying “what do you expect me to do?” to my doctor! I belong to Ataxia UK group. The nearest specialist clinic would be London, couldn’t cope with the travel. Thank you for replying.