The online home of Will and Sara!
Posts tagged MS Hug
UPDATED : The MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘o’ Death
48 months ago
Grey's Diagram Of The Body's Intercostal Muscles.
Lately my absence has been due to serious trouble with something frequently called the MS Hug or sometimes Girdle Pain or sometimes Girdle Band Sensation. There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (although not always). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor here. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work at a telecommunications company and have no medical background.
The Gilenya Saga : How Insurance Hurts Patients – UPDATED
39 months ago
Enough Said.
No entries in a while… for a few reasons. Mostly to do with the sadistic nature of private insurance.
Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” Within seconds, I had what must have been an attack. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At it’s worst, it’s the kind of pain you don’t want to live through.
I have been to the ER where morphine and Valium to the vein had little effect. I have a purse full of narcotics to keep me out of the ER and, somehow, at work.
Multiple Sclerosis : Year One
102 years ago
MRI images from the side make you look like a monster!
My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.