News:

New to the boards? Start with "Welcome! What you need to know as a member of this community"

Main Menu

Do you ever think..

Started by Tivia, January 24, 2013, 03:22:17 PM

Previous topic - Next topic

Tivia

..how can I possibly have all these things  :) Its a mathematical improbability hehe, but yet here we are. Sometimes I think its not all these things, but just one big disease simply because of the odds. I am waiting for the day the research world goes..Ladies and Gentlemen we want to announce that after decades of study research blah blah we now know that *reads off list of conditions* are all part of a single disease process.   ;)

Myshkin

Well, yes I used to. But then I was diagnosed with Sjogrens and the doc said: "Lady, all your diseases and troubles can be attributed to.....: Tadaaaah

Or sort of... I have felt like crap for years, wondering why I kept getting all these strange problems. But Sjogren's explains them all
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

jazzlover

INFLAMMATION is a common factor in MANY MANY "illnesses."
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

Styx

Quote from: Tivia on January 24, 2013, 03:22:17 PM
..how can I possibly have all these things  :) Its a mathematical improbability hehe, but yet here we are.

As I said on another thread, when I first came to this forum 5 years ago, I thought you all were a bunch of whiny hypochondriacs.

Now I'm one of you, and I know better :) Poetic justice perhaps.

Styx

mshistory

Yep, on my good days, I still try to rationalize symptoms as something far less serious ... like this persistent malar rash? Nah, it's probably just rosacea. Hair loss? Genetics. Hives? Coincidence. Other weird rashes that love to pop up from time to time? I'm on a boat load of medication... why wouldn't I get weird rashes?? Sore in my nose? Who doesn't get those from time to time?

Doctors love to have categories for us; neat labels like lupus or Sjogren's or rheumatoid arthritis but I sometimes think we as patients might be better off with a diagnosis of rheumatic disease so that every doctor - not just the rheumatologists who understand (or are supposed to understand) these diseases the best - can treat us symptomatically rather than worrying about whether or not a particular symptom fits into a particular diagnosis (like the urgent care doctors who don't think Sjogren's causes fevers and flares  ::) )
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

Styx

mshistory, very well said.

Styx

irish

I had read an article some years back that said that researchers have been tossing around the theory that Sjogrens is the "main" or basic autoimmune disease from whence all autoimmune diseases are derived.

I do think that they are basically all from the same cause. It is the symptoms or cluster of symptoms that cause the docs to give them certain names. Very easily could be just one big umbrella under which all these syndromes are hatched. irish

jpd54

Living with brain fog, I usually try not to think!!   ;)

                Jennifer
SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, Rosacea, TMJ

Celebrex, Gabapentin, Lasix, Potassium,Hydroxychloroquine, Lexapro, Lisinopril / Hydrochlorothiazide, Linzess, Metoclopram, Nexium, Oracea, Savella, Simvastatin, Vitamin D, Voltaren

slccom

I've always had sores in my nose, like little zits. They hurt like heck until they come to a head and I can lance them. In med tech school I learned that I am a staph carrier.

I didn't know anyone else did that!
Sharon

Sleepy In Seattle

I think there's some kind of T-cell/B-cell/inflammation thing that is at the root of all these things - arthritis, MS, Lupus, Sjogren's - I think someday they will find that it's all basically the same, but expresses itself differently depending on your genetics, body chemistry, etc.

I think they'll also find that it operates differently depending on how it's triggered - by stress, a virus, physical trauma, pregnancy, etc - and then it progresses and changes according to what ELSE you are exposed to or experience...

...but I think it's all going to come back to the same processes at the root of everything. And HOPEFULLY they can find a way to help correct imbalances there, and help us ALL - not by suppressing or destroying the immune system, but by re-educating  or re-balancing it.

My Rheum is part time in the clinic and part time at a big research center and I participate in the rsearch they are doing - I took a half-day tour of the place and it's amazing.

It is easy for me to be optimistic about this stuff because I saw first-hand how many exciting things they are working on, and how many very good, smart people are trying like mad to solve these mysteries. Many of them went into this field to begin with because somebody in their family suffers from Rheumatological diseases.

I am not a scientist and don't know what the answers are - but I know they're out there, and we're getting closer!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Scottietottie

Hi

I've never really wondered. I think that's because I never had a prolonged period of 'wellness' like ever. My childhood was plaqued by ear and throat infectons. I think I had about 22 minor operations before I was 21. (ENT stuff and an appendectomy and then a couple of D&Cs) I had all except 2 of my baby teeth removed by the dentist because of gumboils. (Not all at the same time)

I'm just grateful for 'good spells'.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Tivia

What if they are researching under wrong assumptions? They may never find a cure that way. The problem isnt the disease's, the problem is a faulty immune system. That is the disease everything else is just a symptom/complication.


And really I dont think there is much demand to find cures for anything. That would put so many people out of business, and call me paranoid but I think the pharm co's and the specialty doctors and clinics would not want to go out of business. You really think a company/person that makes its living off the sick want them to get well? There would be no need for lifelong care and drugs were that the case, they would go bankrupt. I think there is no drive to find cures for chronic illness, its big business.

slccom

Quote from: Tivia on January 30, 2013, 10:57:34 AM
What if they are researching under wrong assumptions? They may never find a cure that way. The problem isnt the disease's, the problem is a faulty immune system. That is the disease everything else is just a symptom/complication.


And really I dont think there is much demand to find cures for anything. That would put so many people out of business, and call me paranoid but I think the pharm co's and the specialty doctors and clinics would not want to go out of business. You really think a company/person that makes its living off the sick want them to get well? There would be no need for lifelong care and drugs were that the case, they would go bankrupt. I think there is no drive to find cures for chronic illness, its big business.

Ok. I'll call you paranoid! Nobody is going to go out of business when they find a cure for something, at least, not in our lifetimes. Believe me, there are plenty of chronic illnesses that will still need treatment if they cure one. And there  are injuries.

Sharon

Tivia

QuoteOk. I'll call you paranoid! Nobody is going to go out of business when they find a cure for something, at least, not in our lifetimes. Believe me, there are plenty of chronic illnesses that will still need treatment if they cure one. And there  are injuries.

Sharon

HAHA this us why I love your posts Sharon, set me straight and back to reality ;) Somedays I read the forum to remain sane, thank god you are all here.