Initial Visits and Planning

You have reached a major milestone, a FA diagnosis. Now decisions need to be made (but not a rush) about the team of doctors to gather for the FA'er and the benchmark tests to do that will form the baseline for the future in case latent FA symptoms come to light.

• One or two key local doctors need to have the overview of the FA'ers health and be able to direct referrals to specialists as needed.
  • The FAer's PCP (Primary Care Physician) is a natural candidate for this role. They can order tests and refer the FA'er to local specialists. It would be added value if they would be willing to gain the FA-specific knowledge that would allow sounding-board discussions on FA symptom and/or disorder treatments. If they are not willing you might want to think about changing doctors.
  • The neurologist that probably led to the FA diagnosis is another candidate. It may well be the local neurologist will not be too interested in this role, and equally possible you will not want them in this role if FA is not their specialty and calling. Don't hesitate to drop this relationship.


• It is almost a must to have a FA-specialty neurologist involved in the FA'ers medical life. Thankfully these specialists do exist.
  • In the USA and a few other country locations FARA has organized a set of CCRN (Collaborative Clinical Research Network) clinics to administer their natural history studies and clinical trials along with a Patient Registry. For locations and contacts refer to the Clinical Netowork and Trials page on FARA's website. One of these doctors could be your FA-specialist neurologist to whom the FA'er would go once a year for consultation and the natural history study (some travel expenses are subsidized), and phone and email contact/consultations can be maintained the rest of the year.
  • In other countries the FA'er and family needs to seek out the closest resource. Searching through local FA and Ataxia support groups is the best way to find out followed by contacting FAPG.

Benchmark and Periodic Visits

Refer to "Routine Periodic Testing" in the Medical section of this website for a set of benchmark tests your local "overview doctor" would refer the FA'er out to. The labs, technicians, nurses and doctors involved in these tests do not need special FA knowledge to accomplish the tests. If the tests come back abnormal THEN a FA-knowledgeable resource may be required.

FA Symptom Visits

So something happens. A routine periodic test comes back abnormal or the FA'er complains of pain or another symptom. Now comes the judgement call of whether a FA specialist or doctor familiar with FA is needed/required. Is it FA caused or not (FA'ers can still contract other viruses, diseases and disorders)?

• If in the ER refer to "Emergencies: Hospital and ER" in the Medical section of this site.
• FA scoliosis and heart involvement are different than the norm. A FA specialist would be a real advantage.

Here are inputs by FA parents and IS NOT VETTED for safety or effectiveness. Talk to your doctor before launching off too far into these things that have worked individually for others.

• Our first neurologist couldn't even perform our FA son's neuro exam, he was very combative and didn't have any bedside manners. He did figure out the FA very quickly, and then we fired him!! Remember your physicians work for you and should be somebody that you and your child are comfortable with, because it is going to be relationship that will span decades.
• I have said a number of times that once the diagnosis is done the average neurologist is done also. They have no further value-added. Most neurologists either don't know anything about FA or are cursorily familiar with it. And most neurologists will not stray from FDA approved drugs; not good when there are no approved drugs. Once the diagnosis is made the FAer needs that one doctor that wants to be at the center of their care. Traditionally that is their GP, the doctor that refers them out to specialists as the need arises, although any doctor, if willing, can be that person. It doesn't take that much for them to come up the FA learning curve; they are after all doctors already.