Ataxia and EDS

[pennypoop]

Hi, i live with an unknown type of ataxia thought to be genetic. I have many internal problems with digestive system and unexplained feelings of racing heart and body slowness. My niece has been diagnosed with type 3 EDS, is it possible that my internal problems to be EDS? Could I have ataxia and EDS?

[wobblybee]

Hi pennypoop

I googled and found this, it may be helpful.

ednf.org

Ehlers-danlos syndrome

click - learn more about types of eds

" hypermobility (type3) facts

scroll down frequently asked questions to - gastrointestinal issues.

Of course speaking to your Neurologist would be the best advice.

Best wishes xB

[pennypoop in reply to wobblybee]

Thanks will look and discuss with consultant

[pennypoop in reply to pennypoop]

Just read, very interesting and many of same symptoms, definitely worth investigating

Thanks

[PeteW]

I am similar to you as in unknown ataxia and terrible digestive system. My menu is more and more limited. Processed foods are out. Wheat free and vegetarian works for me. As long as I stick strictly to fish, wheat free pasta or rice and tons of veg, in small quantities, I'm OKish. Also fatigue issues and sleep are bad. I'm thinking maybe fibromyalgia ?ems is an interesting angle but I fear my doc may think I'm a hyperchondriac! Oh yeah, I'm paranoid too!

For me I'm not sure I want anymore diagnosis as all it does is make my travel insurance more expensive!

[Brommie]

Have you tried going gluten free?. I have been gluten free for about three years. I had terrible problems with my digestive system and it has really helped me. Don't expect an immediate change though, give it a few months.

[jill55]

EDS does have gastric involvement including gastroparesis where the stomach muscles stop working. As far as your palpitations are concerned EDS goes hand in hand with POTS postural orthostatic tachycardia. There are many articles on both of these conditions on the internet. Both my daughters have these conditions amongst others. My eldest writes a blog themyastheniakid where she details her life living with both these syndromes. It is followed by hundreds of people including health professionals.

I hope you and your niece find this information useful. Unfortunately understanding of these conditions is patchy in the UK.