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  • Awaiting Diagnosis

    Posted by Vernon Spinas on June 30, 2023 at 12:57 pm

    First I would like to thank Amanda and Dagmar for the welcome to the forum.I currently am awaiting a diagnosis to see if I have ALS or not? It started about 9 months ago with a few slurred words. We thought it might have been a stroke but after a an MRI, CT Scan and bloodwork that was ruled out. I am a disabled veteran so the VA ran some bloodwork on me and I saw my team doctor, at this point  it had been about 3 months and my speech had gotten worse, so I was referred to see a local Neruologist in my hometown. I had an evaluation which showed signs of upper neruon symptoms. I had weakness in my left foot/leg along with positive Babinski Sign, which started with a cramp in my left calf that resulted in my foot dropping. They were not quite sure about my speech but said I had mild tongue weakness and Dysarthria, which was confirmed by a Speech Pathologist.  I was scheduled over the next  couple of months a series of 2 MRI’s, a lumbar puncture, lots of bloodwork, an EMG/NCS. They all came back normal except the EMG/NCS. It showed signs of motor neuron loss in three limbs, and weakness, of course the day I go the fasiculations stopped but the Neurologist told us it wasn’t enough to point to ALS yet but it was suspected I had a Motor Neuron Disease. I have finished all my appointments locally and was referred to UAMS in Little Rock, Arkansas at their Neruomusclar/ALS Clinic but that appointment is not until September 11th. My wife didn’t want to wait that long so she reached out to the Mayo Clinic in Minnesota and we are scheduled to go there on July 12th-19th. Which is great news for us because my symptoms have progressed. I can no longer speak, so I use an iPad and my phone to talk for me. I  have now lost the use of my left foot and leg and now I have  severe weakness in my left hand and it wants to curl up and I can hardly use it. You can start to see the muscle wasting in my leg and the fasciculations are becoming more frequent. I have visited this forum in the past, as a guest and it has been very informative and helpful. My thoughts and prayers go out to each and everyone one of you who has been diagnosed or knows somebody who has it.

    Vernon Spinas replied 10 months, 3 weeks ago 5 Members · 5 Replies
  • 5 Replies
  • Dagmar

    Member
    July 4, 2023 at 12:16 pm

    Vernon, again welcome! You are following exactly what many other (pre)pALS do, in seeking second and third opinions. I hope you find the right neurologist and get the medicines and support that you need. A referral to an ALS Clinic will also be helpful. Do keep us updated as to what happens next.

  • Matt Ashley

    Member
    July 4, 2023 at 2:50 pm

    Vernon,

    My prayers and thoughts are with you for a quick diagnosis and treatment. I have found the VA to be very supportive in regards to ALS. They have been very good about getting durable medical equipment like hospital bed, ventilators, power wheelchair and wheelchair conversion van.

    God bless,

    Matt Ashley

     

  • Maribel Lopez-Cepero

    Member
    July 4, 2023 at 9:45 pm

    Vernon, prayers on your way! We are here to support you and your wife.

  • BARBARA Krings Hargraves

    Member
    July 5, 2023 at 11:53 am

    I ditto Matt’s comment above re the VA.

  • Vernon Spinas

    Member
    July 7, 2023 at 4:28 pm

    Thank you guys for the replies back and for your support and prayers. We are heading off to the Mayo Clinic in Rochester on Tuesday the 11th and they told us we could be there up to 10 days depending on how the appointment with the Neurologist goes? I will update as I can and once again thank you for being there durning this time of uncertainty.

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