Hi all
I got a letter finally from the hospital down in Sheffield because they have a proper ataxia center but they want to do a load of tests on me including another MRI scan is this a normal thing to do and what should I expect with the results
Sheffield is one of the Accredited Ataxia Centres, you can be confident about being seen there.
On being referred to somewhere new it’s to be expected that different tests may be ordered, it’s likely Specialist Neurologists have more experience. And it’s possible you could be nearer an exact diagnosis.
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Thank you for that answer am just hoping I will be able to go to it
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Do you anticipate specific problems…or covid restrictions.
I don’t really know what it is I think half of it is to do with covid and with south Yorkshire being put into tier 3 but it is for medical reasons so that shouldn’t matter should it but then the other half is getting a proper diagnosis after all because I have been lied to all my life about my cerebellar people keep changing there minds to what it actually is because one said it was that my brain never developed properly at birth but then they say its something else that’s caused it and I just can’t get my head around it.
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To be honest, if I were being referred there I would be happy about it. I live in Newcastle, and my local Ataxia Centre closed, my most recent reviews have been in London.
It’s likely that up to now you haven’t been seen by a Neurologist who actually specialises in ataxia, it makes a big difference. At Sheffield, they have access to an Ataxia Nurse who can give additional advice and support, and you may be referred to a Neurophysiotherapist .
I realise there may be covid restrictions advising against moving from area to area, but the hospital will be able to give advice if this happens. And, if you have difficulty making travel arrangements, they may be able to help with suggestions.
I’m still pressing for an answer since a misdiagnosis in the 1990s, don’t give up, if any investigation is offered take it
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I entirely agree with Beryl … just go with it in the knowledge that you are in good hands. You can only judge in retrospect so why not give it a go. I hope it all goes well for you. x
I am an ATAXIAN treated by Sheffield. In Sheffield you can rely on Mario completely and total he is the best in his field, the Professor and Emma the specialist Ataxia nurse. There are of course hundreds of back room staff from receptionists to phlebotomists and Labs, They took several arm fulls of blood from me and a spectroscopy with the MRI scanner. They will if at all possible diagnose you and Mario will tell you personally if at all possible in these weird times. Emma is always and I mean Always available for support. You will get through this, working out strategies that work for you. You are not alone and we will get through it. You have found the community of Ataxia support and Bens friends. Peter Ashbourne.
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Hi Ashbourne
Could I ask you when you had your first appointment how long were you therefor and why you had to have blood taken and whats the spectroscopy for. I didn’t get to my first appointment because of certain people telling me not to but I have got another appointment in Feburary which I will be going to but I just wanted to know how long I would be down there for x
The system was before this madness, was for you firstly to get referred to Mario’s clinic at Sheffield, well done that’s is the first big step. Second big step you will see Mario(simply the best). We may be on phone consultations or maybe not. The diagnosis is the next step. BE PATIENT, BEVERY PATIENT, It may take a long time. This is the hard bit . There are many options available to Mario, I had numerous blood tests about two arm full. He may decide to do a genetic testing on you, he may MR$I you and do a spectrospy, a very very detailed scan of your brain, I don’t know if you have had a mri SCAN BEFORE not particularly pleasant but you will listen to music and need to keep calm and controlled, there will be clanking noises whilst it works. I AM NOT MARIO and am in no way trained. You may need other tests, I have had numerous. The diagnosis may not be quick. Things have improved enormously since I WAS DIAGNOSED If and I say if your problem is genetic you will be offered genetic counselling ,bite there hand off. Sheffield teaching hospital is not a modern Hospital as you will find out, parking if you drive is a nightmare. I have a blue badge even with that it is horrible give yourself plenty of time. Mario is magnificent supported by his team and Emma the specialist Ataxia Nurse My name is Peter I am here for if you need a shoulder I am always here. If you want to tell me about you then fire away otherwise if you need a non-medical question answered ask away. This journey will be a very long and have many bumps and troughs. We all need to get our heads round what our condition is and how to remain positive. MIND OVER MATTER. I am living with Ataxia and will help you in any way possible. Peter
I did a long reply not sure if you got it. Be patient persevere, it’s a long and bumpy road. You will need a support network. I and Ataxia online will be able to help if you want it. Peter
Hi,
Sorry I did read the reply and I was going to reply but I had an English class. I would love the support
Beth
From that reply Beth I presume you are a student, if you want to tell me about your circumstances, I may be able to help more its up to you. In any case you will get through this with the communities help… Peter
Hi,
Yes I am doing my Gcse English which I am finding it hard to keep focus and concentrate with the appointment coming up, I think that’s part of my ataxia really and I suffer from seizures as well but my doctors think it’s to do with my ataxia also but with out going to my appointment in October I have no idea why am having seizures
Beth
We are all here to help, I hope you are fortunate to have two parents that support you. You will get through this. I do not know What Mario may tell you, what he may diagnose. Lets all hope for the best. Good luck. Peter
No it’s a very tricky situation with the parents the only ones I can rely on is my uncle and aunt the reason I didn’t go in October was because of my brother being so stupid saying not to go because of the virus
Beth
Mario will sort you and make any effort to sort you and give you every possible help, he is like that. All the best. Peter
Thank you Peter I appreciate all the support you are giving
me