Highlight

I’ll refrain from talking about my morning ritual, it’s the same everyday. I did some work in the morning and went, with a headache, for Physiotherapy with my new shoes. Wilfred spotted them immediately and had to laugh. The shoes are high and difficult to take off so I decided to skip the massage. So 15 minutes on a home trainer (that went well) was followed by learning the basics of walking.

How to step forward with and without looking at my foot (difficult) and how to step forward with a bend knee and then stretch that leg (very difficult!). Wilfred wants me to put down the heel of my right foot first and then roll the rest of my foot forward in a controlled way. I have not that much control over this foot-ankle system with the result that after I put down my heel the controlled roll is actually a loud ‘flap’. That causes a strange sound effect “FLAP flob FLAP flob”.

Wilfred will take care of postponing my Physiotherapy (last treatment 21st of April) and he will talk to my Rheumatologist to discuss my participation in this hospital’s dedicated “Neurology Team”. I hope that a holistic approach (Rheumatism and Neurology) will maximize my chances that I will recover any functions that I may have left. I guess though that recovery and revalidation of my functions related to the functional area for Speech and Emotion will also need attention. Today I have no idea about the scope of the “Neurology Team”.

The Dexamethosone has an effect similar to Enbrel (Etanercept) on my Psoriatic Arthritis although it for sure is not as effective. I had to stop with the Naproxen to avoid the build up of too much Gastric Acid and I am therefore afraid that when the treatment with Dexamethasone against the Edema stops (I’m still taking 2 x 4mg daily) I’ll be right back where I started with the Rheumatism. Perhaps at that time I can restart with Naproxen again but I would prefer going back to Enbrel.

Priority

This morning, as agreed, the Neuro-Oncology Nurse called me to inform me that the Neuro-Surgeon was called away for emergency surgery in another hospital and that therefore no meeting had taken place. She confirmed that I was on the list of cases to be discussed tomorrow.

I informed her about what happened last Friday (Seizure II) and we discussed this. She seemed considerably concerned about the increase of Keppra and even more about the Dexamethasone. I also told her about my right arm, the fact that my leg had become a bit better and speech had not improved. I also told her that according to the First Aid Neurologist there was a chance that my Glioma had turned into a (partial) grade 3. She didn’t react to that but told me she was quite sure that my priority was going to go up significantly tomorrow.

My wife just came back from the pharmacy and she told me that it took them a long time to help her. They warned her about the effect of Dexamethasone and Naproxen on my stomach, despite the use of Pantoprazol. We had already decided that Dexamethasone and Naproxen was too much and as Dexamethasone seems to work against Rheumatism as well we stopped with the Naproxen. This confirms that we did the right thing. By the way: they don’t sell Dexamethasone in tablets larger than 1.5mg and according to the patient information leaflet a dose of 8mg per day is for serious cases. Nice. I hope that the hospital knows what it is doing.

My new physiotherapist is much more gentle but as the leg seems to have improved he didn’t need to have to be rough. After about 15 minutes of massage I did 10 minutes on a home trainer (that went well) and the last few minutes with my right foot on the seat of a rowing simulator. I’ll try to make a picture for you, it is impossible to explain. The exercise is complex as it is forcing me to make a combination of moves that are hardly possible in my case. Still I believe that I should try. Conscious movement may replace unconscious movement. Remind me of that picture!

What has changed?

I feel much better than expected today but there are a few noticeable differences. First of all continuous hiccups. This was worrying me yesterday already by I was too tired to think much of it. As the only new type of medication was the Dexamethasone today I searched the Internet for clues. I found several. Apparently the Dexamethasone may trigger hiccups. In the article the hiccups were suppressed with low dose oral Metoclopramide. I must call the hospital what to do about these hiccups.

Dexamethasone is also used to treat many inflammatory and autoimmune conditions like rheumatoid arthritis. I’m now wondering if there is anything I can or should change to the medication for my Rheumatism. In the end I’m taking quite a high dose of Metatroxate (15mg per week) and Naproxen (1000mg per day).

My leg has recovered a lot but control over micro-movement (especially rotating the ankle joint and bending the knee) are even more affected (have become worse).  My right arm feels “heavy” which could mean that the Glioma is approaching the functional areas for initiation and control of my right arm. I’m typing this entire post without break so it may no as bad as it may seem.

Neurology or Rheumatology?

Over the last few weeks the pain in my lower back and legs has become worse, especially in my right knee. When I have to get up in the morning is it very hard to get out of bed. My right foot doesn’t want to co-operate and I’m unable to swing my leg out of bed. The same thing happens in the evening: my leg simply doesn’t want to go to bed. I have to perform a complex roll to make that happen. During the day it is easier to manipulate my leg although getting in and out the car is not that easy. I have to pull on my jeans to support the muscles of my leg.

I’m sure that my rheumatism has something to with it but I’m equally sure that my brain tumor is at least partially causing this. I have however no clue in which way the tumor and rheumatism interact. I’m currently taking 15mg MTX a week, folic acid and a daily dose of Arcoxia against the pain (not sufficient).

So today I went to see my Rheumatologist. It seems that my problem is neither related to the rheumatism nor to the neurological effects of the tumor. According to him my tendons and muscles in my leg and lower back are strain. Perhaps because I have started to walk in a different way because of the loss of right motor function, perhaps because I have worked out in the gym too much without taking this into account. He prescribed a different medication (1000mg Naproxen a day) and referred me to a Physiotherapist. I hope that there is still enough time left for the Physiotherapist to help me.