For past days I’ve been putting my sense of great lethargy and cognitive disability down to a possible side-effect of Baclofen, the muscle relaxant drug. However there’s been little improvement in relation to the above since discontinuing it, except maybe I can focus a tiny bit more.
It’s starting to get very scary again. There’s almost no feeling or strength left in my legs bar tingling and sharp shooting pains, which are going up through my chest and into left arm too. Getting episodes of fading awareness where I feel I’m about to flake out. The middle finger of my left hand is doing its own thing, a symptom known as Focal Dystonia. My arms and hands feel quite weak and typing or entering a PIN is really difficult as my fingers aim at every button but the correct ones. My left leg is going from under me “by surprise”, other moments going into cramps. I am losing voluntary control of my bladder too, but there is a good long term solution for that in the form of Botox if it continues. I did not sleep more than 30 minutes last night in spite of being exhausted.
Unfortunately there’s nothing to be done for me the way things stand. No point in attempting to contact MS Nurse service as there’s only one spread among hundreds of patients, and I’d just be told wait until June for next clinic attendance or go to GP. I’d only get frustrated and angry. They only deal with people on Disease Modifying Treatments, one of the series of various immune suppressive drugs given at various intervals by various means.
The way I am heading I will be losing my treasured independence and needing residential care before I know it, and quite frankly I don’t feel mentally ready to face it. Overall I’ve lost a lot of ground in past two years and currently need a rollater or two sticks to be reasonably safe. But even my arms are becoming weak these past days and I found using the rollater a bit tricky outdoors. I’m approaching wheelchair stage, and would do anything to ward that off.
In previous posts I mentioned that I am being denied Disease Modifying Treatment because I am HPV-16 positive , there would be a strong risk of cervical cancer, and because of my altered anatomy following colectomy I cannot undergo cervical smears to evaluate. I could choose to undergo very hazardous surgery to remove my uterus, ovaries, etc which are adhered to my spine, it would involve several days in ICU, likely being kept on a ventilator with possible repacking of my body cavity from front to spine, with likely massive blood transfusion needs. Significant risk of death. Risk of permanent incontinence, destruction of the possibility of further intimacy, bowel damage, almost certain refashioning of stoma, being sliced right through my body and stitched together again, risk of kidney failure and having to go on dialysis, at least for a while.
If I recovered well after months of physio and minding, I could get Disease Modifying Treatment for MS in an effort to maybe ameliorate the speed of my deterioration, and it would remove the significant risk of gynaecological cancer. I am having symptoms too, and can’t be reassured I’m free from malignant change. The only way to check for that is to surgically remove and examine all the tissues.
People ask why do I maintain my €3400+ annual medical insurance, this is why, needs to be as gold plated as possible. One positive thing is that the surgeon who would do this operation is one of the world’s best and specialises in the most complex cases, and is a very empathetic man.
What a dilemma! I will need to consult the Oracle on this one! 😱
MS Martine: a life with Multiple Sclerosis 