That's awesome New   keeps you busy, doing something you love is a bonus  

Not much happening here, back on pain medication to get me through the days  not happy to be back on but it's the only thing to ease the pain ............
Im about to go on a gluten free diet, and dairy free as well, I know it's not the answer for my undiagnosed pain but it might help ease some of the other symptoms, stomach pain is sky high again.

I hope everyone is managing ok 

 
Sammy

It is! Keeping all the records in order is exhausting too, but the end result is so worth it! Tryka (the collie I trained for 3 months) has found a wonderful lady to help, they both need a refresher course in public access, so far though they're better then I expected at everything!

Wow New that will keep you busy 

Hello Mello, sorry to hear about all what your going through and how you seem to be getting fobbed off. I have a few of the same symptoms you have, lower right abdominal pain which my gp says may be irritable bowel syndrome, i also have severe fatigue, weird foggy feeling in my head and a few other symptoms. I too dont have a diagnosis but it has been suggested i may have chronic fatigue syndrome and looking at the list of symptoms you have, you certainly seem to fit into CFS as being the cause of your problems. Hope this helps a little.

a tocopherol is what I'm injecting now. You probably couldn't find anymore articles because the condition's extremely rare and they haven't done sufficient research yet.
The recognized genetic marker is good. This makes me want to get involved with medical morons again. My own fix is good, but medically recognized would be good too.
Autosomal recessive explains a lot too.

I hate to possibly be a nay sayer, BUT, they could be just naming a few symptoms as something and a few symptoms as something else rather then looking at the BIG nasty disease that's very rare. Like with me, I was tested as vitamin D deficient and given vitamin D capsules. She didn't realize that because my gut has this fat absorption problem, that capsules would have no effect.

I think I will miss smoking for the rest of my life but I will NEVER smoke again, it's been 6 months now, yay me   

  to the forum Mello

So sorry it's taken so long to reply, with an 8 month old and my health to deal with I haven't been online much.
It so sad to hear another person suffering, but Im glad you found the forum  

Before all your symptoms started did you travel ? I don't have any ideas for you at present, if anything pops to mind I will be sure to let you know

Be strong, I really do know how hard life can be
 
Sammy

PS- I love your quote (just because doctors give up on you does not mean you should give up on yourself!!)

Wow Keila !
I know your scared but things are moving along for you, finally SOME ANSWERS    this is excellent news (despite the pain)

 
Sammy