I'm afraid I'm going to let off steam here and ask the following questions:
1) Do neurologists understand anything about our conditions?
2) Do they do any research to find out?
3) Do they care?
Having been categorically told that my condition is genetic albeit tested with negative outcomes (and no further testing pending), I dared to challenge, propose possible treatments and correct omissions following receipt of the briefest initial report from my present 'specialist' neurologist. Any response from him had to be repeatedly chased up and eventually arrived 6 weeks later. It was basically a put-down which offered me nothing, informed me that, as long as my scans had been previously 'reported' it wasn't necessary that he personally hadn't seen them and advised me that communications such as mine should await my next appointment (some 8 months since the last) so that 'progression' could be appropriately assessed then.
I rest my case!
Written by
Buffergirl
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Unfortunately General Consultant Neurologists have little awareness and understanding of ataxia, mainly due to its rarity and them seeing few, if any, patients with ataxia, leading to an ability for them to build up experience of the condition.
You could ask (either your GP or neurologist) to refer you to one of the ataxia centres in either Sheffield, Oxford or London. If you are not able to travel to either of these, Ataxia UK has a list of neurologists that have a special interest in ataxia. Again referral to either of them would be by your GP or neurologist. The links below contain more information about the ataxia centres and the list of neurologists who have a special interest in ataxia.
Thank you for your reply. The neurologist I'm now seeing and had to wait a year for his appointment was in fact recommended by Ataxia UK as a specialist but, frankly, I think I was better off with the general neurologist I saw before. I could at least communicate with him between appointments....
Oh dear, I am sorry to hear that. Although Ataxia UK is not able to give out medical advice do please free to contact the Helpline anytime if you have questions you think we might be able to answer.
I totally empathise.. we moved from Essex to Suffolk so in order to receive services,I had to register and start from scratch. My experience was much like yours but having eventually received the answers by letter, I have run out of steam. They've given me home assessments, wheelchair appointments with relevant people. I just have to phone them if I need something. X
Hang in there! I can really relate to how you feel. I’ve been through so much, all because my first Neurologist misdiagnosed my Ataxia and clumsiness as being the result of leg varicose veins! He was a General Neurologist, that, obviously was incompetent. Eventually he was let go from the organization that had hired him. My General Practitioner referred me to an outstanding neurologist, well qualified, after that first neurologist appointment! My new neurologist practiced at a top hospital. She put me in hospital, for tests, for a week, and came up with a possible MS diagnosis. A couple years later, when I had stronger symptoms, of balance, and in coordination, she again gave me tests, including MRI. A possible blood vessel type tumor, was found near my brainstem, from those tests, which confirmed a diagnosis! Medicine to control my blood pressure was prescribed, rather than an operation, because it is a sensitive part of the brain, and is extremely dangerous to operate on. So I was diagnosed with Cerebellar Ataxia! This was many years ago. I have explained my whole story on HealthUnlocked.com. before. I just wanted to reiterate for you, showing you my experiences with incompetent neurologist decisions, that have affected my health! My advice is to try and get an appointment with a movement disorders specialist, rather than sticking with a General Neurologist! Good luck!
Thank you so much for your reply and suggestion. I’m doubtful that I’m going to find anyone more ‘specialist’ locally and just wish I lived closer to one of the centres of expertise. Travel would be a nightmare for me and I have the feeling that it’s just going to be a case of my decline being passively observed and reported. I don’t even have a diagnosis or it seems at the moment any likelihood of further testing. Just a possibility that my symptoms might overlap between ataxia and spastic paraplegia.
I think most neurologists do the very best they can, sometimes they fail. To be brushed off is not good at all. Despite having the loveliest kind neurologist who did the best they could, explaining they have to follow certain routes in diagnosis, I did ask to be referred to Sheffield. So pleased I did. They also have Ataxia nurses who will do as much as they possibly can to help.
Thank you for your reply. I hear so much about Sheffield which seems very pioneering (in comparison to most of the rest of the country). Such a shame that that knowledge couldn’t be more broadly available.
When, many years ago we first moved here to South Wales and changed GP, this one here looked up anything he could about Cerebellar Ataxia before my first visit. His records had shown my condition.
Once year I used to go to the Ataxia Centre in London but the drive became too much so I switched to a neurologist here on the advice from someone on this forum. (I have not used any names as that is maybe not correct)
It was a good change as he knows a lot about Cerebellar Ataxia, so it is possible to find someone who knows.
I empathize! I go through a similar scenario. My neurologist does not like it, when I bring in research results articles, and want to discuss them with him. He always is dismissive, and won’t read them, so I don’t do that anymore! I’m at the point that, because of the apathetic attitude, I am met with, why should I even go to the Doc! Here in the USA, I have to pay for my Doc visit. If I didn’t need. Medicine, I would gladly like to forego a medical evaluation visit, because nothing productive comes of it, to help me!
I'm completely with you. Every single suggestion of cause or treatment, as in your case, is rejected. I don't understand why unless, by insisting the condition can only be of a genetic origin (which admittedly, is always a possibility), their work is done, the patient remains the victim and the doctor doesn't have to admit he can't fix it. As I see a yoga teacher weekly who concentrates on breathwork, muscle strengthening and positive thinking, I too am certainly questioning the point of a doctor in my life right now.
Thanks for your valued support! My Ataxia comes from a hemiogioma type blood vessel that is pressing in on my brainstem, where the cranial nerve roots enter the brain, so that causes uncoordinated movements and swallowing slowness, and balance problems. There’s not much they can do to fix the problem, but it would help, if occupational therapy could help me a bit, but the Doc doesn’t ever want to refer me. Here in the states, they call that palliative care, especially for us older than 75, patients!
Hi Buffergirl. I have also given research papers to my then neurologist, to no avail, don't think they were even looked at! In the same consultation he told me he didn't believe in gluten ataxia despite his daughter being coeliac!!!It beggars belief doesn't it. A gp said she didn't believe in non-coelic gluten sensitivity too!
If I hadn't self diagnosed gluten ataxia, after much research and reading research papers, going gluten free, there was nothing to lose after all, the ataxia would have been much progressed by now. Going to Sheffield soon and hopefully a spectroscopy MRI will confirm this.
What we need is medical professionals to up their game and relate to the life changing condition of ataxia. Ataxia specialists need to go to the next level and move on from what type of ataxia it is, and focus on treatment to stop progression!!!
That's my rant. Any ideas how to facilitate knowledge?
Hi Penelope 2. That's great that you've found a cause and can manage your condition before it progresses. This is what makes me so angry, that there is simply no urgency, that appointments are spun out and now I'm told that I should reserve any questioning until this dedicated time slot when there will be absolutely nothing to offer from his side and only decline on mine. No diagnosis has been made and all the following causes have been peremptorily dismissed: gluten, virus, trauma (despite a strong link), in fact anything I suggest. I am trying to keep to a gluten-free diet and treat my PTSD but this sort of medical resistance is far from helpful. I absolutely concur with your belief that these specialists should stop shifting responsibility to the over-worked testing labs and offer patients something that might possibly alleviate their symptoms other than mere analgesics. They should start by identifying the striking similarities between so many of these neurological conditions and, at least consider that, where treatments have been approved for some, they might equally benefit those others who are kept in medical limbo awaiting an elusive diagnosis. Their blinkered opinion on genetics should also be reviewed as this is not facilitating progress in terms of understanding the link between so many of these disorders which could, otherwise, be having much better outcomes.
You have summed it all up so well.Balance and coordination with legs is a real problem but I still have good arms and hands use. If a neurologist had said 'try going gluten free' years ago there would not be atrophy of my cerebellum. This is the problem for all of us, time is not on our side.
A friend has MS and its a different world, 6 months appointments, medication to keep the condition under control and lots of support. Obviously I would rather see her well but the world of ataxia is 10 to 20 years behind this.
Ataxia UK should be using their position to get neurologists and specialists more accountable to forward thinking and speed of treatment. I wish I could influence this in some small way and have thought long and hard of a way of doing this. Hubby has said that I cannot take on the NHS.
Probably still needs someone famous like what is happening with MND to get the message out there.
Hi Penelope2 - you must of gone to Frimley Park Hospital!!! I have also gone gluten free and was diagnosed almost 12 years ago and my progression is very slow and I am awaiting an appointment at Sheffield. I totally agree with all the rants - I have requested many things but only when I eventually broke down asking for help did I get referrals.
Hi Pam_ann, what I don't understand is when, in the news, they talk about 'preventive medicine' as the way forward in saving the NHS and ensuring that diseases can be discovered genetically and treated in their earliest stages. With advances in genetic testing, they say, this can now be done so much faster.....really?
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