Thanks for joining me again. I hope you have all had a beautiful week!
So in my last blog entry I spoke a lot about my diagnosis of Parsonage Turner Syndrome. It has been a crazy ride and even two years later I suffer consequences of the disorder on a daily basis.
But today I was going to talk a little bit about the treatment my neurologist has been using, in combination with some oral medications, to help manage pain and help with flare-ups.
The Treatment I undergo is called ‘Intravenous Immunoglobulin’ or ‘IVIG’ for short. We all, as humans, create immune globulin in our blood. When people donate blood at the blood banks scientist then separate the gamma globulin (exactly the same way they would plasma) and bottle it up to infuse. It takes 10,000 to 150,000 blood donations to make just 1 bottle of IVIG infusion so a massive THANKYOU to all those silent heroes out there donating that precious gold. The reason these infusions are giver to people with Parsonage Turner Syndrome is because, although PTS is a Neurological disorder, there are studies to suggest that there is some sort of immune system involvement and with IG being an immune builder it can help build the immune system and have the potential to help with symptoms ect.
Going back to October 2016, when I landed in hospital and was first diagnosed, I was initially an inpatient for almost two months and thats when I began the IVIG Treatment. Initially I thought that the treatment would be simple, like a saline drip but I was wrong; nausea, vommitng, dizziness, headaches, shaking. And I'm allergic to a large group of drugs so there is very little they can do for me bar pain relief.
Going back to October 2016, when I landed in hospital and was first diagnosed, I was initially an inpatient for almost two months and thats when I began the IVIG Treatment. Initially I thought that the treatment would be simple, like a saline drip but I was wrong; nausea, vommitng, dizziness, headaches, shaking. And I'm allergic to a large group of drugs so there is very little they can do for me bar pain relief.
To keep my body functioning and pain levels at a reasonable rate, every second week I go into St Andrews Hospital as an inpatient and have my treatment done over night. If the treatment goes well then I go home the next day but if I have had side effects or complications then sometimes I will need to stay another few nights.
Having this bizarre life where I go from home to hospital to home and back again has changed my life completely. I can’t work right now due to the unpredictable nature of my illness and when I may need more treatment. I don’t really have friends anymore (other than a very small select few who I can count on one hand, they know who they are and are amazing). I can’t travel or climb mountains or safely carry a baby in my own belly just yet (that’s the one that kills me).
But all of these things are not fixed. Two years ago I couldn’t even get out of the hospital bed, like I physically couldn’t get up and now I’m doing normal things like driving and cleaning and spending time with my dog again. And I’m also dipping my toes back into my passion of photography, which feels incredible! And it’s thanks to steady long-term IVIG treatment. Approximately I have had about 40 IVIG infusions but I believe that number to be higher as I have had more treatments when I have been in on long admissions. It has been sticking with these 40 infusions; going into hospital 40 times that has gotten me to where I am and hopefully keep going.
I'll talk a little more about hospital life in my next post but if any one has any questions or suggestion please don’t hesitate to DM me.
I leave you with this quote,
Love and light,
Megan
“You are the series of mistakes that had to happen for you to find you”
___ Atticus
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