SCA 6 and colon problems?

[fosca]

Hi, my husband was tested SCA6 about 3 years ago. He has always suffered from constipation, but since January he has been admitted to hospital twice for an intestinal blockage caused by volvulus of the sigmoid colon. Please forgive the terms, we live in France and I am translating. I ws talking to our GP yesterday who wondered if there was any possible link to his SCA6. Does anyone have any experience of something similar?

[eileen200271]

Hello fosca. My husband has a problem with his bowels. He goes from extreme constipation to "the runs". He has had various tests at the hospital and it has been put down to the SCA6. There is no definitive pattern, nor is it caused by diet. So it is just something else he has to live with. Luckily, he has not needed to stay in hospital. We just treat each symptom as it occurs. Sending our good wishes. Eileen 🌼🌸🌼

[Cazlyo65]

Hi, I have SCA6 and suffer awful gastro problems - bile salt malabsorption/oesophagitis/gastritis and recurring stomach ulcer. My gastro doesn't know if it's SCA related or just unfortunate 

[fosca in reply to Cazlyo65]

Hi, your problems sound more than my husband's; his gastro is frankly terrified by the neurological aspect and I have to explain to him what the condition is. Thanks for replying, we are awaiting results from current blockage at the moment, but it is the Bank Holiday !

Hope things improve for'you,

Fosca

[fosca]

Hello Eileen,

Thanks for replying. The forum has brought up other posts from you 10 months ago. My husband, his twin brother and their first cousin have all been SCA6 confirmed, The geneticists have traced it back to my husband's grandmother. His mother died in 1974 and had what was classified as Parkinson's. Our son has also been tested, positive, for the gene. I was very upset when he did this as he is currently 35 and has no symptoms. The other siblings and cousins have preferred not to be tested. They all have children, some of whom are likely to carry the defective gene of course.  Like you I feel I am grieving for my husband and my son.  

My husband is currently in hospital with a recurrence of bowel problems, the C-scan showed other, unrelated problems, and my greatest worry is that the enforced immobility will reduce even further his ability to walk.  

Our GP is a rock, writing prescriptions for all sorts of things that are only marginally her domain, but she knows very little about the condition. There are very few ataxia sufferers in our region of France, but we belong to a group of Cerebellar Syndrome sufferers from all over France. 

I wish you all the best and thanks for replying,

Fosca

[lola261184 in reply to fosca]

Has anyone in your husbands family missed out on gene. Also how old when symptoms appeared

[Magicalwomanz in reply to fosca]

I have twins in family - uncles one passed away the one who had condition passed away could we be related as many people with this same genetic condition are

[eileen200271]

Hi fosca, how are things after the Easter break? I hope things have improved somewhat. Keep strong! Kind thoughts are with you. 🌸🌼🌼

[fosca]

Hello Eileen,

How nice of you to write. My husband was discharged from hospital this morning. He is on a strict non-roughage diet with a Movicol sachet 3 times a day.

Mobility is really, really, reduced after spending time immobilised, although the physio dept sent someone everyday to do some exercises.

We are seeing our GP  tomorrow to organise physio sessions, on top of the once weekly exercise he already does.  

Onward and upward and thanks again for your interest.