I'm 42 and have got sca6 I was diagnosed 8 mths ago its early stages. I find myself having trouble swollowing

[kareen]

Is it to early in sca6 to happen as I thought it happened later in sca6 my dr knows nothing about sca and I don't see my neurologist for another 4 months please help

[HarryB Administrator]

Hi Kareen

Thank you for your question.

SCA 6 is one of the slowly progressive ataxias but the symptoms and severity vary between individuals. It is possible that the swallowing difficulties you are experiencing are related to SCA 6 but there are other causes of swallowing difficulties that your GP must rule out. As well as doing this, your GP needs to make an assessment of your swallowing difficulties (whatever the cause) to decide whether you require a referral to see a speech and language therapist. It doesn't matter that your GP knows little about SCA 6-as long as he/she knows that swallowing difficulties occur in SCA 6.

My advice would be to go and see your GP.

Best Wishes

Harriet

[kareen]

Thank you so much for your fast reply Harriet . Yes I agree with what you said, my dr looked it up and said mmm yes you can get swollowing difficulties in sca and that was it, none of the drs I see know very little or nothing about it. My mum has sca6 and she only started her dizziness 7 years ago and mine started about 10 years ago its strange to me that I'm getting all this so early and with bad leg pain a really bad ache and leg giving way when walking on occasions I don't know what's normal and what's not. I m not keen on my neuro as he just seems to rush me on my appointments .

[annasgonesailing]

Call your neurologists office as they might refer you on or see you earlier than scheduled. As Harriet said it isn't impossible for it to not be sca but instead something treatable so go back to the gp.

[HarryB Administrator]

Hi Kareen

Unfortunately it is a common situation that GPs know little about the Ataxias. This isn't surprising given how rare they are and GP exposure to this group of disorders is very limited. However that doesn't make it any less upsetting or frustrating when you are a patient in that position. Ataxia UK produces Guidelines for doctors and other health professionals as to the best practice for management of the ataxias. There is a summarised version for GPs. We recommend that you give a copy to your doctor. These are downloadable from Ataxia UKs webpage (ataxia.org.uk) or you could phone the office for a hardcopy (0845 644 0606 or 0207 582 1444).

Harriet

[kareen in reply to HarryB]

Sorry for such a late reply. But thank you both for your replys

[sylviagreenhalgh]

I saw the neurologist last week- my daughter came with me this time and things have progressed so that I need a wheelchair. I have swallowing difficulties for many years and only last year was it diagnosed as a part of this lovely cerebellar ataxia so I was referred to a speech and language therapist and that has made all the difference. I swallow water before I try to eat anything and that really helps. My speech is affected too but again I drink water all the time to keep lubricated. I still choke sometimes - usually when I am very tired- I can even choke on my saliva but the therapist has made all the difference. when I saw the neurologist he looked at my most recent scan and said I had increased Hydrocephalus but he did not think a shunt would help. has anyone else been told this ? I found it quite scary but he said it explains my poor walking and other symptoms. I think that is the worse thing about this ataxia - there is no treatment but in spite of being very limited physically I feel happy in myself. the fatigue is the worse thing on a day to day basis so I try to keep positive and enjoy life as far as I can.good luck to everyonexx