Last night, on my CIDP support group, a woman with both CIDP and MS described that she felt like a giant tuning fork. I instantly knew what she meant. That’s the sensation I keep calling the buzzing, quivering, jittering that wakes me up. We talked back and forth a bit. I started Googling for buzzing, quivering, tuning fork. It seems to be common in all the neurological problems that neuros have thought I might have at one time or another, but mostly MS. I know it’s silly…..but I feel huge relief to know it’s not just me.

The real name for that feeling is parasthesia. At first I got confused, because the sensation I get that feels like warm pee running down my leg is also called parasthesia. Docs told me that years ago. Turns out, they are things that happen with neurological diseases….therefore are related. It bums me out that the oppositional neuro blocked my referral for a consultation with the neuro that specializes in this stuff.

The air was worse to breathe today. My ribs and lungs hurt….but my head hurts the most. Geeze….I haven’t even left my apartment. I thought about getting the mail and taking out garbage…..but each time decided I was too dizzy.

A big oh, oh with my teeth. After 3 years of no dental care and holes in my teeth getting bigger and bigger the entire time, I am having some distressing mouth pain 😦 I wish I knew what to do. It really sucks being this low income, with no way to help myself.

I try not to obsess over the fact that ever since August 5th, I no longer have a neurologist. Some of the MG discussion group topics today make me anxious. I am in big doo doo if my MG flares……and MG flares with dental infections 😦

I have been having an emotional day. I wrote this today, with some editing for the blog……Before I was ever diagnosed with MG, my doc sent me from Vermont to Boston to be evaluated for ALS. I know how scary that diagnosis can be. Just now on the noon news, there was a segment on the ice bucket challenge and how it has helped ALS research. They plan to do this challenge every August until there is a cure. I burst into tears. You know what…..I want a cure, too! When I was diagnosed with cancer, there’s a huge support system backing up that disease. People I know with muscular dystrophy were able to go to camps and get all sorts of help thanks to the MDA. Folks around here who have down syndrome gets all sorts of help and fun trips through advocacy groups. Another friend has mental illness. She is in a special program to buy her a new bed, new appliances, clothes, etc. My main problems are MCTD, West Nile Virus and MG. Mostly I get misunderstanding and hatred from the medical commununity….and there are no perks. I still live on my $733/month disability and pay 72% of that for rent. I struggle to buy food and I haven’t bought new clothing, except underwear, for years. Where’s our cure? Where are the organizations that are TRULY helping us? Still crying in Utah…..

Yes, feeling sorry for myself today. I just want to escape…..from my body, from Utah and from everything that is unfair or hurts. Sigh…….

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