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How long have you had these symptoms? Do you think this has come on suddenly?


Wendy, that is great news that you have no side effects. Some people swear it's their miracle drug, and I say do whatever works.

And to Sue, Wendy, and Molly... I should just explain...

The nausea/vomiting started about 1.5 years ago. I would get "flares" of it that would come and go - with no real pattern or identifiable cause. Docs said to never mind it - it's always subclinical. It's just been getting gradually worse, and this latest barfy flare has lasted 3 weeks so far and is just getting worse. I can't even keep down water unless I'm taking gravol suppositories (anti-nauseant). Even with the gravol, it's so hard to force food in me - it just makes me bloated and feel awful. But I can still eat a bit, and take in water - and I have no diarrhea or anything strange going in that department.

I also know that even if I do get food in me, I'm not absorbing something - I've lost so much hair. Used to have really long pretty hair, but I've had to cut it super short because the top parts won't grow more than 2 inches before it falls out and repeats. There is always hair everywhere around here. I'm worse than the cat! lol

The extreme, constant nerve pain in my thighs started 6 months ago. After seeing 3 neurologists, it was diagnosed as small fiber neuropathy, but my GP thinks otherwise. I take 3000mg of gabapentin for it, and morphine if I feel I need it. Even if I'm not taking morphine, I'm still sick, so that's not the culprit.

And I'm just so so so tired. I'm so sick. So sick that I'm really very scared. I don't know what else to do, and I'm too tired to advocate for myself. My boyfriend is so busy with work that he's only around a few days a month now. My dad is still recovering from his brain injury in Feb, and my mom has to take care of him - and she's got so many health issues of her own to deal with - I have no idea how she does it. There is alot of stress in my life as well, so that surely can't help.

I've paid a rather large sum to be a member of a private clinic with GPs here, but everything seems to move...just... so... slowly. Next week bloodwork. Follow-up the week after. Then more bloodwork a week after that... etc. So frustrating. Meanwhile I'm down 12 lbs in 3 weeks so far. And I have a really big tongue now for some strange reason, and a few more really weird, but again, subclinical symptoms. So I get told not to worry....

My AS is under control with NSD. I think this is something else.

So... ya... apologies for the very long rant-ish post. That's why I haven't been around much and posting anything very useful lately. Just really, really tired.