h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Nicely done!
Informative.
I will this as a link in the De Myelin Nation
A889194

Goddamm it Abbi, you just beat me to it!!!!

We're nothing if not speedy, us de-myelinated lot eh!

I think we can expect extra traffic at De Myelin Nation; better get ready

Well done Mikey, great article. I've got CIDP, the chronic form. Not a lot of fun, but it could be worse.

(I say this on a "good" day; on a bad one you will find me howling in the "struggle" section of De Myelin Nation!)



Terri.

ps: have we got Mikey down as a member yet? I think it's about time we got active again; her exams are over; I can't access the page, can you Abbi?

This is the best luck I have had all day. I came into the site thru the Nation. I often do,it often works better. I am in brunel about half the time!

Pyrotrope (the other author) is actually the one who as Guillain-Barre. I just knew lots about it because I wrote a term-paper on it for school -- it was for my class on the epidemiology of food poisoning, and I wrote this mammoth paper on how campylobacter food poisoning causes Guillain-Barre. Gotta love graduate school, huh?

I have peripheral neuropathy from my autoimmune stuff, but it's not a demyelinating kind (or so all the horribly nasty EMGs tell me). They think it's just from my joints being chronically inflamed, and that does something nasty to the nerves that run through the joints. Although one of my docs keeps saying off and on that they should probably test me for CMT.

And can I mention how ecstatically happy I am that I get to taper down (and potentially OFF) my prednisone this summer?!?!?!?! This has been a goal for so long, and I thought it would never happen. I am overjoyed.

Hiya

The more I hear about all this, the more glad I am that my takes a conservative approach.

The only drugs I have are bumper doses of Vitamin B6 & B12. They definitely DO help the symptoms; if I miss a few doses (which I sometimes have to; vitamins are not supplied free like other medications) the twitches etc get much worse.

He's never suggested steroids etc.

The strongset pain-killer I'm able to take is soluble paracetomol 'cos my liver isn't too clever.

Sorry to hear about both you & your mate; it literally is a pain isn't it?

Terri.

I've had months/years where I wouldn't have survived without the steroids and some of the other immunosuppresants. They keep my lungs working and my intestines from bleeding too much or from closing down altogether and they stop the pericarditis and pleuritis and everything. Plus keep my temperature normalish, and let me walk and all. I think there's some things vitamins and all can do wonders for, but there's some conditions where you really have to beyond that if you want to keep your major organs intact. There's still choices of which meds to go for, and my doctor and I both try and keep me on the lowest doses of the least toxic medications possible -- which means some juggling now and then (like now they've added on another one so that I can go down on the prednisone).

I'm allergic to most of the pain medications, but I have become the biofeedback and self-hypnosis queen, let me tell you. You work with what you have, you know?

Hi Mikey

I know. I'm so sorry, your probs are huge in comparison to mine.



Take care,



Terri.

I actually think I have it easier than a lot of people with chronic illnesses -- since I've been like this since I was a kid, it's been much easier for me to adapt. I think the shock to my system and to my lifestyle would be drastically more difficult if I had become ill as an adult. And really, when it comes down to it, that's what matters, I think -- not whose disease the doctors call more severe or whatever, but the actual impact it has on the life you lead. I'm still able to work full-time (although my boss periodically pushes me to go on disability or go part-time), I'm still able to do things that are fun for me -- I think that's what's really important.

Good Luck getting off steroids!
That would be wonderful.
Sounds like you would not be with us had you not gotten them.
I am glad you are around

So am I!!!

3 for Mikey!






Terri.