Another Diagnosis Option

[isabelle-desmarais]

I will talk about my case. I don’t know to which symptoms you refer but in my case, I am 52 and I don’t have still develop some symptoms. On the other hand, the fact that your parents don’t have the problematic gene is certainly strange. What does your neurologist say about it? Try to consult another neurologist to get a second opinion.  Good luck.

[Tina-D]

I agree with Isabelle. Try to find a neurologist studying FA by calling NAF, MDA, FARA.

[grant-lile]

Thanks Isabella and Christina D.  My neurologist has suggested genetic testing with someone else or be a lab rat again and go to the Mayo Clinic where I will probed and prodded by them.

[terence-ohanlon]

Whoever said your parents “don’t have” the gene that causes FA isn’t quite right. Everyone has it. In FAers it’s faulty but it’s there. In non-FAers it functions properly… and it’s there.

Check with a neurologist or a genetic counsellor. Make sure you understand what they tell you, even if that means asking them to explain it over and over in different ways.

Be aware also that FA is a very individualised condition. The list of symptoms you were told about is an aggregate of symptoms that have presented in many other FAers. The list of actual symptoms that present in any specific FAer may vary considerably, as can the speed of progression of the condition.

[grant-lile]

Thanks for the reply Terence. I’m in contact with my neurologist and genetic practitioner to get some clarification with my case. I’m just concerned at how quickly my body has deteriorated since being diagnosed.