Plopony🐴

[Plopony]

🤗

I was diagnosed hereditary SCA. I have not yet taken the genetic test to determine what type. I suffer with headaches and nausea on a regular basis along with many other symptoms. I am wondering if anyone else has the nausea and headaches.😊

[Brommie]

Hi Plopony,

I have hereditary ataxia too, I have SCA 1 and received my diagnosis about 10 years ago. Firstly can I suggest that once you have had your diagnoses confirmed you push to get a referral to one of the specialist Ataxia clinics. I go to the one in Sheffield annually and they also have two nurses that you can contact if you need any help or support during the year. At the clinic they will give you a blood test, check for gluten intolerance and organise an MRI. I cannot speak highly enough of the staff at Sheffield, they are kind and thorough and even though Sheffield is a two hour journey for me and parking is a nightmare, it's worth it.

[Plopony in reply to Brommie]

Thank you for the reply, but I live in the United States and my neurologist did speak of any Ataxia clinic. I live in the state of La. There is no clinic here. 🐴😊

[Sharon_g in reply to Brommie]

You guys is so luck we got no support clinicso

[Sharon_g in reply to Sharon_g]

I mean in South Africa

[Brommie in reply to Sharon_g]

Well that's why there are forums like this😀 Keep your chin up, this is a forum full of lovely people who will give you as much help as they can.

[Sharon_g in reply to Brommie]

😊

[Brommie]

Dear Plopony,

I'm so sorry, I didn't realise that you were American. There is an American Ataxia website that I will send you a link to at the end of this message and hopefully they should be able to answer some of your questions. If you have hereditary Ataxia is there someone in the family that you can talk to?

I think that sorting out those headaches and nausea has to be your priority because until you do you won't be able to think straight. I had headaches all of my life and my digestive system was pretty awful until I tried an elimination diet and found out that gluten and lactose were causing my problems.

I am always reluctant to recommend things but elimination diets are an approved way of finding out if you have a problem with certain foods.

Here is the link that I told you about:-

livingwithataxia.org/

Good luck

[Plopony in reply to Brommie]

Thanks!🤗🐴

[Thomaslondon]

My husband has been living with cerebellar Ataxia for approx 10 years. He often suffers with nausea and severe headaches. I usually find that it is when he has not eaten well or at regular intervals. He tries to have healthy choices but he has to have a very calorific diet as he cannot keep any weight on. Does anyone else have this problem?

We have only just joined this site and it has some invaluable advice. Thanks everyone.