Hi everyone

As many of you may know, since May 2022, the Montour family has been searching for a diagnosis for Cameron and his strange and worsening neurological symptoms.

In May 2022 Cameron started experiencing twitching in his right bicep that would never stop, even while asleep and resting. The twitching would continue 24/7 - 7 days a week and began to spread down his right arm, next into his left arm and eventually everywhere from his head down.

The constant prolonged twitching of his muscles lead to significant weakness, predominantly the right side. After going to the doctor several times and multiple blood tests to try to figure out the cause of the twitching, Cameron was referred to a neurologist in January.

After more testing with the neurologist, he diagnosed Cameron with Motor Neuron Disease/Lou Gehrigs Disease. He instructed Cameron to quit his job, get his affairs in order, and to spend time with family. That news was incomprehensible and devastating for them and their family.

The neurologist then sent them to a Motor Neuron Disease specialist in London, Ontario immediately.

Motor Neuron Disease has a spectrum of disorders and conditions that require different treatments, so diagnosing what type of MND Cameron had was the next step.

After the long process of elimination with lots of blood tests, EMG’s, MRI’s and physicals, the specialist was able to narrow it down to Multifocal Motor Neuropathy or Lou Gehrigs. But during this long process that took months to do, Cameron’s health declined rapidly. The prolonged weakness and twitching started to cause muscle atrophy, to the extent of not being able to use his hands or arms for simple motor skills anymore. He is no longer able to hold utensils, toothbrush or wash/brush his hair or get dressed on his own as a result. As his conditions worsened he developed muscle cramping everywhere along with full body weakness, as well as wrist drop/foot drop’ on the right side. The foot drop causes loss of reflex, difficulty walking and inability to lift his ankle/foot causing regular falls for Cameron.

Both of those conditions do not have definitive tests to diagnose so London recommended that Cameron tries IVig treatments once every 4 weeks to see if his symptoms improve. If there is any improvement after the treatments then the diagnosis would be Multifocal Motor Neuropathy. He would continue those treatments and chances of full recovery were not high still. He would most likely have twitching/fasciculation’s, muscle atrophy and some physical limits forever.

If there is not improvement, then the diagnosis is Lou Gehrigs and there is no cure, and the treatment available is only to ease symptoms until death.

The IVig treatments have not made a significant improvement yet.

As a Powerline technician it has impacted Cameron significantly at work. Cam is unable to perform his normal work duties anymore since he is unable to hold tools or climb poles. He has been fortunate enough to take a supervisor position to maintain a work life but he would like to be able to work again when he is needed and remain happily in his career until he retires.

With Cameron’s symptoms and health worsening still, Cameron and his wife did some more research on their own. They went for a second opinion at a naturopath to discuss Lyme disease further. Cameron had already tested negative for Lyme disease in Canada when they went to London. But through research, they realized that the blood test in Canada is inaccurate over 50% of the time so they paid to test for Lyme disease out of country.

Six days after sending Cameron’s blood work to Germany, they received the news that he was positive for Lyme disease with chronic co-infections. So now the journey of finding treatment has begun for them.

Canada’s wait for a Lyme literate Medical Doctor that believes in the test from Germany is nearly impossible to find. Cameron has begun holistic treatments through a naturopath but needs antibiotics and more aggressive treatments to recover.

Cameron’s treatment is going to consist of them travelling out of country using a combination of antibiotics with alternative therapies and rehab/therapy.

The cost of holistic medication is approximately $600+/monthly

Further treatments out of country, their regular monthly bills and expenses and time off work for both Cameron and Chelsey as they continue treatment is what they need support with.

Cameron has always been such a hard worker and an avid outdoorsman who used to love taking his girls camping, hiking and canoeing and he deserves to be able to get back to that again and spend the quality time with his girls that he craves.