Posted by Stephanie:

We’ve decided it would be a good idea to start a care page for Mike to keep everyone updated on what’s going on. It’s been a bit of a roller coaster as things keep changing with his condition

I’ll start with some background. This will be long as it’s taken awhile to get to where we are today.

Back in January Mike started to have stroke-like symptoms. Slurring his speech and loss of fine motorskills – he had a hard time writing etc. So we went to our family doctor and he ordered an MRI. They couldn’t get him in until May so we opted to go to a private clinic and get one done a lot sooner. By then it was a couple of weeks after our first doctors appointment and the symptoms were getting worse, now he was losing coordination in his whole hand and arm on his right side. The results for the MRI were fairly inconclusive, it showed no stroke but the dr thought that he likely had a couple of TIA’s (pre strokes) so he put him on preventative meds and said he would contact a neurologist in Lethbridge for his opinion. The neurologist agreed with the family doc and they expected the symptoms to resolve and get better within a short amount of time. The MRI had also showed he had a paranasal sinus infection that is apparently is a nasty infection and could cause neurological issues. So he was put on antibiotics for that and we waited. He was really tired and weak during this time but we figured that might be because of the infection. Mostly his symptoms stayed the same, but maybe in hindsight they were gradually getting worse. About 6 weeks later, they all of a sudden got much worse. He experienced some blurred vision, had trouble swallowing and was losing coordination and balance in his right leg as well. We took him to Emergency in Fort Macleod and there he went by ambulance to Lethbridge. They did an CAT scan right away and again it didn’t show a lot but it showed small spots on his lungs so they thought maybe it was something called sarcoidosis and sent him by ambulance to Calgary to the neurology unit at South Health Campus. After many tests and a lot of waiting for results they didn’t have an official diagnosis but were going with the sarcoidosis theory. Sarcoidosis is an autoimmune disease that involves clusters of white blood cells that get inflamed and cling together to create granulomas or “sarcoids”. It can effect any organ and usually starts in the lungs so they figured it was likely that there were these clusters in his brain blocking or putting pressure on the part of his brain that controls coordination. At that time there were some pale spots on the MRI in these areas which were assumed to be these clusters. He was put on an aggressive steroid treatment for 5 days and his symptoms appeared to be getting better so they prescribed him a steroids medication for at home and after an almost 3 week hospital stay he was sent home. Once home he started gradually getting worse again. So we called the doctor and they told us to be patient, so we tried to be. A couple weeks later they were still getting worse so they told us to come back in and they read admitted him. More tests and waiting and after an almost 2 week hospital stay this time they were still going with neurosarcoidosis but wanted to try a different medication. Througout all this time he had multiple MRI’s and they didn’t change much but the scans did show significant improvement with the sarcoids in his lungs. The new medication had to be approved by the government because it’s very expensive and they are only allowed to administer it if nothing else works. The day after he was discharged he got approval for the new medication but now since he was an outpatient he had to go to an infusion clinic to get the meds, which was another 10 day wait until he could get in. Finally on May 23 he got his first infliximab infusion and we thought things were finally going to start getting better. They got much worse. His infusion was on a Thursday and we had a follow up appointment with the neurologist the following Tuesday. He noted that not only were his symptoms getting worse but he was developing new ones so he wanted to get a brain biopsy to see what was going on. The neurosurgeon he spoke to wanted more tests done before she would do the surgery so Mike was re-admitted again but we had to wait for a bed to open up. Thursday (May 30) they called that a bed was ready so we got there early afternoon and he was able to start a new round of testing right away. They did another MRI and this time the MRI showed a lot more spots of hyperactivity. He told us that they were now thinking it was sarcoidosis in his lungs but must be something else going on in his brain. He told us he thought maybe cancer. Either brain cancer or blood cancer but it could also be something else entirely. Tests were done by Friday afternoon and because not much would happen over the weekend they gave him a weekend pass and asked us to be back by Sunday night. We had an emotional but good weekend with visits from family and friends and now we’re back in hospital waiting for results of last weeks tests. The results will determine if he needs the brain surgery or not but right now they say there is a high chance that they will do the surgery. So we wait.

We truly appreciate all the thoughts, prayers and support we’ve received from everyone. In the neurology ward here there are many older people with dementia etc and most don’t have many visitors. We are extremely thankful for all visits, kind words, meals, and everything everyone has done to help make this all a little easier for us and our kids.

Tuesday, June 4, 2024

A small update:

The test results we were waiting for came back – everything they tested for came back negative, no significant changes from the previous spinal taps, so they are planning to go ahead with the brain biopsy. He’s going for another MRI today or tomorrow and getting another infliximab infusion as well tomorrow. Then they will discharge him later tomorrow and we wait until we hear from the neurosurgeon. They said they expect the surgery to happen within a week

Wednesday, June 5, 2024

Just a comment about yesterdays update:

The point of the spinal tap was to look for cancer cells, specifically lymphoma/ leukaemia. Those cells were not present in the samples They also got a specialist to look deeper into the cells and came back that no cancer cells of any kind were detected. From what we understand that doesn’t rule out brain cancer but they said there is a low chance of that as the MRI’s don’t show any tumors or masses.

Todays update:

Doctor was in this morning and told us that last nights MRI had not changed since the previous one so that is good. He also told us that they got a metabolic and genetics specialist involved and we should have an appointment with them next week.

Brain surgery is still the plan although now he said it should happen in the next week or two. The doc told us that the neurosurgeon said he had never seen an MRI like Mike’s before.

So now we go home and just wait to hear from them.

Mike is still feeling good, he has no pain, and he is still strong and looks good. All of his other organs are all functioning well. He does get frustrated sometimes as he can’t speak well, walk well or do very much with his hands. Sometimes a little emotional but generally he is in good spirits.

Again thank you so much for all the well wishes, prayers, and support of all kinds!