New to the site and looking for people's lived experiences

[Frodocat1]

Hi, I recently had a very unsatisfactory neurology assessment which concluded after about 20 minutes and did not even include an assessment of my gait. I mentioned at the outset of the process that my sister had had cerebella ataxia but at that time I had no symptoms but now showed some similar symptoms although not as advanced. My assessor showed little interest in my history and kept repeating, "its progressive you know, you could have an MRI scan but there is no treatment". The following day I asked my GP for a second opinion at a specialist centre in Sheffield. She agreed to refer me as soon as she receives my neurological assessment report. My queries at the moment are: is a second assessment worth pursuing, Is it a good idea to have an MRI scan, does everybody have an individual ataxia pathway, is this illness fatal, how do people cope i.e do we just get on with our lives as best as possible day by day.

I am a 68 year old, fairly optimistic, upbeat person, with a healthcare background but I find myself ambivalent about how much I want to know about my own ataxia for fear it will have a negative effect on me psychologically. Thanks to anyone who can offer any insights.

[cocoa]

Definitely accept the referral to Sheffield .... many people here recommend it.

[Frodocat1 in reply to cocoa]

Thank you for responding and also for recommending I attend Sheffield.

[wobblybee]

The most interesting thing is...your sister had ataxia. This is a strong indication that it could be genetic, and quickly identified if she had been able to give a blood sample, or had known which type herself. An MRI would show if you have Cerebellar Atrophy, which would explain symptoms but would not identify a specific type of ataxia.

It’s possible your Neurologist assumed you simply had ILOCA (Idiopathic Late Onset Cerebellar Ataxia)..Idiopathic means no known cause, and as he said, there is a likelihood this would be progressive and at the moment there just isn’t a cure for any of the Ataxias. But, there are medications, and sometimes therapies, that can alleviate specific symptoms.

And, there are Ataxias that can respond very well to treatment, particularly if the cause has been a deficiency, or they were triggered by something and the cause is identified.

It’s likely there’ll be a waiting list to be seen at Sheffield, but it would be worth it for peace of mind. Best wishes 🙂

[Frodocat1 in reply to wobblybee]

Thank you for responding. My sister's ataxia could not be identified although an MRI scan showed up brain atrophy and it was concluded she had some genetic form of ataxia and her symptoms became multiple and seriously affected her functioning. While she was being assessed at a specialist unit in London, I was offered and gave a blood test for genetic testing but nothing showed up. At the time the neurologist concluded I did not have genetic ataxia. My sister died in 2015 and some of my symptoms only really became noticeable to me in about 2016/17.Hopefully I'll get a referral to Sheffield and find out more. Regards.

[ddmagee1]

Go to Sheffield if you are referred there! Unfortunately, some neurologists don’t seem to show much empathy toward patients with milder symptoms. I had one like that, and it seems discouraging to the patient, because Ataxia is a scary ailment, to be diagnosed with, for many patients. I wish some Docs would be more supportive of patients; however, there is no rule that they have to be. Then there are some Docs, who are wonderfully supportive. So, perhaps physician burnout is a cause for some, who seem nonchalant. Docs are humans, too, so maybe we shouldn’t rush to be judge mental. I would recommend finding s neurologist, who you feel comfortable talking to, if that’s possible, under current health care system rules. Good luck! At least, you know you will get support from fellow Ataxia sufferers in this forum!

[Frodocat1 in reply to ddmagee1]

Thank you that's a helpful approach. I think I feel a bit overwhelmed at the moment and so react quite strongly to people's reaction.

[PatsyIpswich]

I agree with how you feel but apparently it's all about meaningful statistics and comparative progression.. x

[claire01]

I echo all the replies, I myself go to Sheffield and 100% recommend that you take the opportunity to be referred, like it has been mentioned an MRI will identify any cerrabeller atrophy and Professor Hadjevselliou requests blood tests there and then.... Good luck 😊

[Frodocat1 in reply to claire01]

Thank for responding and sounding so positive about Sheffield. They say knowledge is strength but I find myself feeling a bit uncertain about how much I want to know or not. I think overall it'd be better to get a grasp on what is going on and I take hope from knowing everyone's body responds in an individual way. I think I may have expressed that a bit clumsily.

[claire01]

Me personally attending Sheffield made me feel a lot more confident in knowing that I was been looked after by medical professionals who have an understanding of the condition, helps you not just physically but emotionally too, the Ataxia nurse is always at the end of the phone tooThis forum is also very useful for support and help ☺️

[timk Volunteer]

You may also wish to contact the Ataxia UK Helpline (on which I volunteer). They can be reached on [e-mail] or on 0800 995 6037. Opening hours are 10.30-2.30, Monday to Thursday. The helpline is closed on Fridays. They will attempt to answer any questions about diagnoses, and living with ataxia, and guide you through the complexities of ataxia.You may also like to become a friend of Ataxia UK, for which there is no cost.

Best wishes,

Tim

[Maxineto]

You could have hydrocepholus which is water on the brain at your age which could explain your gait and more. You need a MRI of your brain and a good neurologist. I had it, but it took several doctors to find out what was wrong with me. Surgery corrected the problem which was 20 years ago.

[Hidden]

The early days of ataxia are certainly frightening. A clear diagnosis can appear helpful but if it’s ataxia then be prepared to make some life changes! I hope the replies you have received shows the support available through this forum. SCA is not generally life threatening but it can be life changing.Good luck with Sheffield. Being from a health background I expect you will draw comfort from the team there.

Keep on using the forum.

Nigel

[Frodocat1 in reply to Hidden]

Thank your response is helpful.