Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group finally a referral to a hematologist!

Thankfully, diabetes does not run in my family, and blood work suggests I'm not insulin resistant. One point for me.

Fruit, dried fruit, juices, and smoothies... I'm going to see if I can handle banana. Good idea about beans - maybe chickpeas on salads would be tolerable.

I also tried sprouted grain bread and it seemed to agree with me more than brown rice did, surprisingly. But that was just one trial, I'll have to see what happens if I try it again.

Megan, I'm so sorry you have to wait to get in to see the hematologist. I have a dear friend in the UK who can get the meds she needs for her RA - no funding in her area. My hope is that once you are seen, you are treated quickly and successfully.

My thoughts are with you,
Jewelz

Chocolate is very bad for dogs, their liver is unable to cope with it, poisons them!!

'Bally' is 'acceptable' usuage in place of 'bloody hell'...<VBG> Probably 1930s expression.

How are you with potatoes, Megan? They're an extremely good carb source. Or turnips, carrots or parsnip. Yams? I'm just trying to think of good carb sources, but don't know how low starch these are (except potatoe which is part of Dr. Ebringer's original idea of low starch - but we're all different, yes?).

Also, now that you have the referral, you have the right to get the name and phone number of the clinic the appointment will be at. Which means, you can call and be put on a cancellations list to get in even earlier! Although January is way better than March. What a gift it must have been when you found that out!

Warm hugs,

Megan,
I am just checking in.
How are you, any changes?
You should have come over for Thanksgiving.
Lots of hugs, a few kisses, many games and played outside
in the warm Kansas air. The food was perfect!

Thanks Jewelz, I hope your friend finds the help she needs too.

Root veggies are out for me. And corn is another one I miss, actually. Anyway... no biggie.

I was changed to a different hematologist today - not sure why. Makes me suspicious though.

My mom got her porphyria test results back today - they ran the wrong test. So she has to do it over again and wait 2 weeks for the results. AGAIN.

My neurologist seems to think me testing positive to porphyria is TOO rare. He wants me to repeat the basic porphyria urine test for PBG. So he sent me a requisition, and it's for the wrong thing. Now I have to leave messages for him for the next week and hopefully he can send me the right requisition again.

My GP refuses to do anything more with me until I've seen the hematologist. Even with my eyes - they've been SO sore lately, not red. But I'm wondering if it's the start of iritis maybe. I'm the only ASer in my family who hasn't had it yet. And my GP took at look at my eyes and said to maybe try some antibiotic ointment in them. He hadn't heard of an AS connection with eyes. "Iritis is very rare." Great. Don't investigate or treat me then. KInda like the porphyria thing. It's been loads of fun lately.

Hi Lon, that sounds absolutely perfect! And one of these times, I WILL join you, you never know.
Please take care of yourself grandad Lon, I know your health hasn't been too great lately, and you tend to overdo things. We need you around here for a long time. And since I'm such a nice Canadian, I can't harass Kat too much. lol You're so much better at it than I am.
Love you lots

Megan - This guy definitely needs educating. Suggestion. Print off 'a' Iritis/AS article and stuff it in his hand/on his desk/post it to him - personal...

Where do some of these doctors 'find' their qualifications. Sigh. Meantime, suggest you get yourself to an optho person, PDQ gal. Eyes one does NOT play with - but you know that. Go kick AS hon -

Huh????? Come on doctor! Did you get your degree off the back of a Cornflakes packet???

I remember being taught differential diagnosis for spinal pain when I was an undergrad PT (25 years ago) and we learned about the AS triad - 1.thoracic and SIJ pain, morning stiffness etc in men 18-35 y.o. If you're suspicious, ask about 2.gut problems and 3.eye problems... BINGO!

I recently had a lady present to me with what I would consider a 'classic' psoriatic arthritis picture. It had been completely missed by the GP who sent her for a spinal CT scan and said "just a bit of joint space narrowing in the lumbar region - that must be the cause"... (of your searing butt pain, stiffness and sciatica)

I broached the subject of PsA with her, gave her some basic info and suggested she might like to discuss it with her psoriasis specialist at the next visit, knowing how sensitive doctors are about being gazzumped by "lesser" allied health professionals. She tells me that without batting an eyelid he agreed with the likely diagnosis, then offered to put her on methotrexate for 6 months, without *any* discussion of further investigations or explanation of PsA. And she had *previously* told him all about her spinal/butt pain...huh??? Do they not have ears OR eyes???

Needless to say, she ended up in my rooms in tears thanking me for figuring it all out. Hello people - this *should not* be rocket science for doctors!!!

I think sadly it is a reflection of an overworked and understaffed medical system, where GPs are forced by lack of resources into doing 'crisis management', not practice medicine... and by all accounts, under Australia's healthcare system you are a lot better off than in the USA, Canada or the UK!