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    Hello everyone, my name is John and I was diagnosed with PMA in May 2020. My initial symptoms started early summer 2018 with occasional cramping in my left forearm, and towards the end of the summer I started feeling bicep weakness in the same arm. About a year later my right arm started to feel weaker and was noticing atrophy in my left bicep and left hand. After seeing my primary care physician he immediately scheduled a cervical MRI and referred me to a neurologist for an EMG and nerve conduction study for my left arm. MRI showed typical cervical degenerative disc disease for a person my age, and EMG showed lower motor neuron involvement and no conduction block.

    Next came a barrage of blood tests which came back normal except for B12 on the low side of normal and creatine kinase slightly elevated. The neurologist scheduled another MRI for my brachial plexus which came back normal. She then preformed a Conduction block and EMG study on my right arm and both legs. Legs were fine, right arm showed lower motor neuron signs. She referred me to a neurosurgeon for a second opinion regarding nerve impingment which he said atrophy probably not being caused by cervical DDD.

    The neurologist then ordered blood tests to check for GM1 and GAD65 antibodies. GM1 came back negative, but GAD65 was extremely high. She then ordered IVIG treatments, the first round was 70 grams per day for three straight days. Roughly 4 days after the last treatment I started feeling improved strength in my right arm. I was able to pick things up much more easily than before. This boost in strength only lasted about three days and then I was back to my weakened state. Four weeks later I had another IVIG treatment, this time it was 100 g in one day. Did not notice any improvement. Same thing four weeks later with no noticeable improvement.

    My neurologist then conferred with a colleague from Mass General Hospital, both agreed to double the dose of IVIG for two months. There was no improvement, at that point my neurologist referred me to Mass General Hospital's Healy center for ALS where I was given another nerve conduction study along with an EMG that showed no conduction block with lower motor neuron involvement in my arms. Diagnosis was PMA with some sort of an immune component.

    I was prescribed Riluzole with a slew of supplements. I ended up seeing a Lyme literate Doctor who ordered a number of weird blood tests along with blood samples sent out to specialty labs across the country. I tested positive for four different tickborne bacterias, and was placed on antibiotics. The doctor told me the bloodwork that came back show that I've had an ongoing infection for some time. I do live in a high endemic area for Lyme disease, and a few months before my onset we got a dog. Could my PMA have been caused by a tick bite? Who knows, the Lyme literate Doctor thinks so and it coincides with Dr. Tedone from's beliefs. I did not mean to write a novel here but hey, I'm bored.
    Last edited by xraydude; 16 December 2021, 19:48. Reason: Did some editing to make it easier to read :-)

    Hi John, welcome to our very useful friendly forums. I’m glad that at least you have a slow form of ALS/MND. I don’t know anything about Lyme Disease sorry. Take care, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.


      Hi xraydude good to hear from across the pond. Hope you'll keep posting....even when you're not bored😃😃
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


        xraydude Forgive me for being so blunt, but 530 words in that block of text is very difficult or impossible to read for many forum users.

        Perhaps you would edit the post, inserting paragraph breaks, allowing more users to read your story.

        Many thanks.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.