The diagnosis process can be frustrating. Some people end up seeing multiple doctors or getting misdiagnosed before getting to the right neurologist for an accurate diagnosis.
This is why it is important to be proactive, advocate for yourself, and ask your doctor to see an ALS specialist as soon as possible. You do not want to lose valuable time before receiving the type of care and support you need. |
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How is ALS diagnosed?
Neurologists often begin with an initial neurological screening that includes an EMG test and nerve conduction study. Depending on the results, they may order followup testing, such as an MRI or blood test, to rule out other disorders or diseases with similar symptoms.
Test results combined with a physical examination and detailed history of symptoms provide the information needed for an ALS diagnosis. Some people have very clear-cut symptoms that can lead to a quick ALS diagnosis, but for others, the correct diagnosis may not be immediately clear. When there is uncertainty, it is important to see a neurologist who specializes in ALS. Some people get misdiagnosed with ALS when in fact the symptoms are being caused by a different disease or disorder. More common, however, is that people who do have ALS initially get misdiagnosed with something else first, which can result in unnecessary back, neck, and carpal tunnel surgeries when the real culprit is actually ALS. |
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How can I get an accurate and timely diagnosis?
If you are worried you might be showing early symptoms of ALS, you can visit a local neurologist for an initial screening. If ALS is still a possibility, make an appointment with a neurologist who specializes in ALS.
Ask your current neurologist or local ALS organization for recommendations. You can also visit our ALS Clinics Directory to locate a clinic near you and schedule an appointment with the ALS neurologist. |
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Should I get a second opinion?
After being diagnosed with such a serious disease, it is reasonable to seek a second opinion. Because an ALS diagnosis will affect the way you plan for your future, you will want to make sure you have minimized any doubts about what is causing your symptoms.
When you schedule your appointment, explain that you are seeking a second opinion for an ALS diagnosis. This may help get an appointment quickly. |
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Before your appointment, make sure the neurologist has your initial medical records and test results. Write down any questions you have and ask a loved one to accompany you to provide support and help take notes.
If your second opinion diagnosis confirms ALS, we suggest making an appointment at an ALS clinic and contacting your local ALS organization. The sooner you get connected with a team of experts, the more support you will have, and the better your quality of life will be.
If you are a military veteran diagnosed with ALS, you should be eligible for service-connected benefits through the VA.
If your second opinion diagnosis confirms ALS, we suggest making an appointment at an ALS clinic and contacting your local ALS organization. The sooner you get connected with a team of experts, the more support you will have, and the better your quality of life will be.
If you are a military veteran diagnosed with ALS, you should be eligible for service-connected benefits through the VA.