How does your neurologist follow what happens to you in the future?
When your neurologist sees you on your return visit, he or she will ask you how you are doing and what has happened to you since your last visit. Do you have any new symptoms? Have prior symptoms improved or worsened? Have you noted any improvement or worsening of your ability to walk or engage in your usual daily activities? Are you having any problems with your thinking or memory? Are you depressed?
It is not unusual for people to forget details of what has happened in the interval since they last saw their doctor. A self-report may be influenced by fatigue, depression, anxiety and other illness. Less often, your report may be less than accurate because of a desire to please your physician. For these reasons, and because changes in MS can occur so slowly that you may fail to recognize them, it is often helpful to have a close friend or relative accompany you when you visit your neurologist. This person can also make sure that you have asked your important questions, can help you remember what the neurologist tells you, make sure that what the neurologist tells you is understandable, and provide someone with whom you can discuss what the neurologist tells you.
After you report what has happened to you since your last visit, your neurologist will do a neurological examination to see if your physical condition has changed since your last visit.
How often should I have an MRI?
At certain intervals, repeat brain. and sometimes spinal cord, magnetic resonance imaging is important to look for asymptomatic inflammation or to check how you are doing on treatment. Current guidelines from the Consortium of Multiple Sclerosis Centers (Consortium of MS Centers 2018) suggest an MRI of the brain every 1-2 years while you are on disease-modifying therapy to assess for subclinical disease activity (i.e. new T2 lesions or gadolinium enhancing lesions without new symptoms). Less frequent MRI scans are required if your MS is stable after 2-3 years of treatment. MRI scans should be done: if you have an unexpected clinical deterioration or need reassessment of original diagnosis (gadolinium-based contrast recommended); prior to starting or switching disease-modifying therapy; approximately 6-12 months after switching disease-modifying therapy to establish a new baseline on the new therapy; and, if you are a female, after you give birth to establish a new baseline.
A special situation occurs if you are on the disease modifying therapy natalizumab. On this medication, your blood needs to be checked for the JC antibody every six months. A positive result on this antibody test may be a forerunner for a serious brain infection called progressive multifocal leukoencephalopathy (PML). Once you are on this medication for more than 18 months, if your antibody for this infection is negative you need a brain MRI yearly. If your antibody is positive but low, a brain MRI needs to be done every six months and if your antibody level is high, every 3 months.
When I have an MRI, what should be imaged?
Generally, an MRI of the brain is sufficient for follow-up of MS. A spinal cord MRI is recommended when you have symptoms referable to the spinal cord (which can include leg weakness or stiffness, or a change in your bowel or bladder functions) or are older when you are diagnosed with MS. (Consortium of MS Centers 2018)
Should I have gadolinium?
Gadolinium is an agent which can be infused into your vein when you are having an MRI scan which shows evidence of current CNS inflammation. Gadolinium, however has been found to accumulate in the brain with repeated infusions and the long-term risks of this buildup are unknown. Thus, it should be used sparingly. Gadolinium needs to be used in certain situations. If you are diagnosed as having a clinically isolated syndrome, gadolinium will help to determine if you have MS. It also is necessary if you have highly active disease, your condition is rapidly declining, you have unexplained and unexpected clinical worsening, or when your neurologist is concerned that you may have an alternative diagnosis other than MS. Finally, gadolinium is helpful when your brain MRI shows a large number or size of T2 lesions which could obscure the finding of a new small MS lesion (Consortium of MS Centers 2018).
How often should I see my neurologist?
You should see your neurologist at least twice a year. You may need to see him or her sooner if new problems develop or depending upon the disease modifying therapy you take.
What should I ask my neurologist?
Seeing your neurologist may be stressful and sometimes pressured causing you to forget some of the questions that you have. Keep a log of your journey with MS and write down your questions as you think about them in between visits to your neurologist. To keep your log complete, ask your neurologist for a copy of his written report and obtain copies of the results of your laboratory studies and MRIs. These reports are invaluable should you require hospitalization and are under the care of a new neurologist in the hospital or if you need to see a new neurologist.
How often do I need laboratory tests?
Routine laboratory test should be done according to your primary care physician’s recommendations except for a vitamin D level which should be done initially and then yearly. You may need other laboratory tests, and laboratory tests more frequently if you are on certain disease modifying therapies. This will be discussed in my third post.
Should I see someone who specializes in multiple sclerosis?
Patients treated on a high efficacy disease modifying therapy (discussed below) which have increased risks of side effects compared to lower efficacy disease modifying therapies should be followed by an MS specialist or at least by a neurologist who sees many patients with MS. In the Unites States, you can contact the National MS society or Consortium of MS Centers to find an MS specialist. In areas without MS specialists, I would suggest seeing a local neurologist to have a physician available immediately if needed, but also, seeing an MS specialist once every year or two.
Certain health plans do not have MS specialists on their physician panels and unfortunately, some MS patients can’t afford health insurance. Many MS specialists will see MS patients on a cash basis and some MS centers may have funds available to see patients at reduced rates if you are unable to afford a specialist. There are three national MS charitable organizations, the National Multiple Sclerosis Society , Multiple Sclerosis Association of America ; and the Multiple Sclerosis Foundation . Some of these organizations have funding to help MS patients.
Even if you don’t have health insurance it is critical to follow up with a neurologist periodically. Most people with MS benefit from disease modifying therapies which often can be obtained free of charge if you don’t have health insurance or the ability to pay for medications. In the long run, the cost of getting worse from MS greatly outweighs the cost of seeing a neurologist.