Tuesday, June 18, 2024

Mike had a follow up appointment with his neurologist in Calgary today. The results from last weeks tests are beginning to trickle in. He tested negative again for any type of cancer cells and negative for Lyme disease. His esophagus biopsy did test positive for carditis, which is a side effect of the steroid and is minor, but he’s on meds for that now so we’re hoping that might help a little with some of his speech and swallowing difficulties. His skin biopsy came back with a little inflammation but mostly inconclusive. All the testing they did for viruses or bacterial infections have not come back yet. His gut biopsy for the metabolic and genetic specialist hasn’t come back yet either but they did note one abnormality, so there might be something there. The dr explained a little how his metabolic make-up might be playing a part in this but we need to wait for the rest of the results to come in to confirm anything. He went over a few possibilities but he doesn’t know yet so I don’t think it’s worth me sharing those quite yet. He is also consulting two more neuro specialists, the only two in Canada in that particular area of study, to see if they have any insite. And we heard back from a couple others in different countries and they both are saying the same thing as Mike’s doctors, they said to trust our doctors as it appears they are doing everything they can. So we will continue to wait and do what we can in the meantime to make things as pleasant for Mike as we can.

It’s been pretty rough on him and he’s frustrated and losing hope. He can’t speak well and has very limited mobility right now but he does enjoy having people around and visiting. It helps keeps his spirits up.

Thanks for all your continued love and prayers and visits.

Thursday June 20, 2024

We received a phone call from the neurologist today. He told us Mike tested positive for a virus which he believes to be causing the lesions in his brain. This is all very preliminary yet as these test results did just come back and next steps still need to be confirmed with the appropriate specialists but this is what we know so far. The virus itself is carried in about 60 to 70% of the population however there are very few documented cases where it gets triggered in the brain. Dr said it was likely the sarcoidosis (and possibly the paranasal sinus infection) that weakened his immune system to the point that the virus was triggered. So the first step is to get him off of all his immunosuppressant medications. We can stop the methotrexate and infliximab infusions but we have to slowly reduce the prednisone to avoid a reverse reaction from his immune system. Once he is on a low enough dose or his immune system is strong enough there is an experimental antiviral treatment that he can likely get access to. This treatment is not approved in Canada but the dr has already spoken with the National Institute of Health in the States and he says Mike can get treatment through them. This last part will depend on what the specialist says and what they decide to pursue. He said there is also a chance we might see some improvement as soon as he is off the immunosuppressants.

That’s about all we know so far. We’re taking this as positive news but we have learned to be a little cautious of what we’re told. Things may change and may not go exactly as the doctor expects it to but at least now we have some answers as to what is going on and a possible path forward.

Wednesday, June 26, 2024

Mike was admitted into Foothills hospital this afternoon. He had been feeling weaker and still declining this past week so when we got here for an appointment today they admitted him with the hope that a neurosurgeon would do the brain biopsy within the next week or so. He’s getting the pre testing done within the next day or two and then we will hear what the surgeon thinks, if he wants to go ahead with the biopsy or not. Mike’s main neurologist, Dr Hahn, told us on Monday that Mike not only tested positive for the virus but he also had antibodies from having the measles when he was younger and I guess that can cause brain complications when you’re much older. So they have to rule out one of those before they can start treatment and the best way to do that is through the biopsy. So still not for sure that they will do it but it’s sounding promising so far. The neurologist here said he’d review Mike’s file in the morning and then come talk to us when they have a plan. I will update again within the next couple days when I know more.