• Hi, Only 6 days since being diagnosed by a highly regarded Neurology Professor and have had an MRI & a nerve conduction study.  Symptoms are a weakness and muscle loss in my right hand, shortness of breath on exertion and the doc says my right leg lacks strength.  All else is fine.

    Seeing a highly regarded Neurology  specialist and volunteering for a trial in another week.

    However, my concern is that I have read how difficult it is to determine an ALS prognosis, and involves a specific blood test and a spinal tap.  Having neither of these raise some doubt about my diagnoses. Whilst I respect the two highly regarded Professors, shouldn’t I have had more tests to confirm?

    Obviously still in denial mode.


    • Hello Peter, and thank you for posting on the forum. There is a battery of test that are typically conducted including a nerve conduction. Different Clinics may use different assessments to collect information. Normally they are ruling out any other disease or illness that could be the cause of your weaknesses and other symptoms. ALS mirrors many other diseases and that is why it is difficult to diagnose. Typically the blood test and spinal tap can be used to rule out other diseases and to test for genetic mutations associated with ALS. If you are involved with a clinical trial, that may be part of the study. I’ve heard of doctors making diagnoses after one or two visits and others make it over several appointments within 2-3 months. It is possible that also varies depending on the results of the genetic testing or the length of your symptoms and the severity. As always, I would suggest you talk to your doctor. You also have the option of getting a second opinion. I’ve heard of many pALS making a list of questions as they arise to share with their doctor. Having ALS, or any disease, is overwhelming. There are a few reputable websites that have accurate information about ALS including ALS News Today and the ALS Association. Please keep us posted on what your doctor shares with you. And, please continue to post on the forum!

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