Doctors and pharmacists
Neurologist
The doctor who leads the medical side of ALS/MND, makes the diagnosis and oversees medication and monitoring.
A neurologist specialises in the brain, spinal cord and nerves. In ALS/MND they usually make the diagnosis, decide about disease-modifying medication, monitor how things are changing, and act as the doctor the rest of the team works around. You will typically see them least often of anyone in your team, which surprises people.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Diagnosis, and explaining what the tests did and did not show
- Disease-modifying medication, and whether it is right for you
- Monitoring, and what the numbers at each visit actually mean
- Referrals to the rest of the team, which usually run through them
- Clinical trials, and whether you might be eligible
- Medication for symptoms such as cramps, stiffness and saliva
When you might meet them
- At diagnosis, and at intervals afterwards
- When you want a second opinion, which is a reasonable thing to ask for
- When a new symptom does not fit, or is changing faster than expected
- When you are considering a trial or a new treatment
- When you want the whole picture rather than one part of it
Things you could ask about
- What are you watching for between now and my next visit?
- What would make you want to see me sooner?
- Am I eligible for anything, including trials, that we have not discussed?
- Who do I contact between appointments, and about what?
- How do you and the rest of the team share information about me?
Not to be confused with
Not the person to call about a day to day problem. Most teams would rather you rang the specialist nurse or coordinator, who can reach the neurologist if it is needed.