• Posted by Amanda on November 20, 2019 at 9:29 pm

    We’ve posted topics on how difficult it is to get an accurate ALS diagnoses in the past. Some of our members have shared the process they went through to find out they have ALS; but this is an important topic and I think many of our new members might find our members helpful.

    As many of our members have experienced, the road to a correct ALS diagnoses often long and winding. Many people are diagnosed with something such as MS, carpel tunnel or numerous other diseases when in fact they have ALS. According to the World Care website https://www.worldcare.com/2017/04/19/misdiagnosis-als/

    10% to 15% of people are told that they have athey have ALS when they have another condition; and 40% are told they have something other than ALS, when it is in fact ALS. (These stats vary  a little from site to site).

    We know that there is not a single definitive test that neurologist can use to diagnoses ALS. The do many test and go through the rule out process.

    Some of the latest research and articles are offering hope for better and quicker diagnoses using MRIs, genetic testing and using biomarkers.

    pALS members, what was the process like for you? How long did it take to get an accurate diagnoses. Do you think your diagnoses is correct? What advice would you give to newly diagnosed pALS and thier families? What resources have provided you with suport?

    Dagmar replied 4 years, 8 months ago 3 Members · 2 Replies
  • 2 Replies
  • Bill

    November 21, 2019 at 9:21 am

    For me diagnosis was about 14 months. Local neurologist and neurosurgeon said they didn’t know. The neurologist wanted a wait see await approach coming back every 3 months. He said it did not look like ALS. My insistence on getting to a university MND specialist eventually led to diagnosis but the wait for appointment at medical school was 7 months. My feeling was local neurologist frankly didn’t care to test and research. My nerve conduction studies and MRIs were done through a neurosurgeon before I went to local neurologist as first thought was a cervical spine problem.

    For anyone looking for diagnosis, get to a MND center of expertise as soon as possible. Local Drs just don’t see enough MND.

    • Dagmar

      November 21, 2019 at 11:27 am

      I agree with you Bill. Unfortunately, general practitioners and even neurology specialists are not yet adequately familiar with ALS (symptoms, tests and referral). Anyone with suspicions of ALS/MND should seek out their nearest ALS/MND center.

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