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

I'm with Molly on this one.... my eye doesn't usually go red with iritis, and it doesn't always get that sore. My first bout was pain free - I knew something was wrong when I realised it wasn't a greasy contact lense that had made my vision go foggy... Get it checked out as soon as you can, and until you can get in to see someone bath your eyes a couple of times a day with a baking soda solution (1 tsp:1c I think) just in case there is blepharitis going on which can make them iritiated and can cause photosensitivity too. Warm flannel over the eyes can help both conditions - my optho suggested warm tea bags on the eyes as an alternative to the flannel. Make yourself a couple of cuppas and sit back... Whatever is going on, these won't do any harm in the meantime....

Here's one for the doc to go along with a kick from me: http://emedicine.medscape.com/article/1201027-overview

Like you need something else to deal with Meggy...

i agree with everyone else, please go to an eye doctor. hopefully its not iritis/uveitis. last year my eyes were really bugging me and it turned out to just be blepharitis and the dry eyes that that causes. warm water washes and "dry eye" drops got me through the spell, went away, but now that the weather is changing (dry air?) it's back.

Megan - Here's another one for you to add to 'excellent' recommendations fom Kurumi. Manuka honey. Make up a solution of it, and bath eyes. Manuka honey is antibacterial and very healing. Will help the eyes. IF you can't find Manuka, then, bio raw honey (as other honeys are heat treated sooooo, goodness compromised!)

The tip was given to me by Dr Lawrence (of LDN renown). (My bain cells must av'bin asleep, innit? )

Take care -

(Just had a thought Megan. Having printed off the article that IKurumi linked you to, take a yellow highliter and highlite the pertinent areas that refer to Uviitis/AS. Then that ???**$€ fella will have NO excuse for continued clonking cretinous ignorance... )

Megan, if you are inclined you may want to investigate/re-investigate turnips. Last time I tested them, they passed the iodine test and they also didn't cause me any pain. Left me with a little bit of a heavy feeling in my stomach, but I think that was due to the amount of milk and garlic I used to make mashed turnips. A little bit the problem though, is that turnips aren't the tastiest thing and it seems as if some creativity is required to make them more palatable.

Hope you are navigating your medical adventure well.

heh, it always pays to be a bad patient =) don't take bureaucratic rubbish lying down! make sure you've done your research before any appointments so you know exactly what you want to ask, any tests you want done. every time I go to see my rheumatologist I do most of the talking, she just kind of sits there and agrees with me and tells me the limitations of the health system.

Ya... I do know better.... you'd think. lol
Just getting very tired of going to doctors and being sent home.
I get the feeling that my latest problem, the eyes, may be caused by a new medication - adderall. I'll stop that and see how I do. If that doesn't work, I'll start a course of prednisone, see an optometrist, and revisit my GP.
Thanks Molly. Do you have big plans for the holidays?

Thanks Louise. Glen and I are beginning to seriously wonder about this GP, and sent him a bit of a less-than-friendly email last night, demanding answers to some questions we've been asking for months now. Haven't heard back from him yet, of course.

lol Don't you love being considered a "lesser" health care professional? I work with doctors, take the same classes as doctors, but no one would ever consider that I have 1% of the knowledge of doctors. Bugs me. I realize I don't have any of the practical experience, but I can guarantee you I do more research.

Thanks Em. I think there's a chance that maybe it's the adderall causing my eye probs. Will lay off that and then reassess. Fingers crossed.
Would love to give the doc a kick. And I'll blame you. haha

I think I could use a GPS at this point.

Turnips you say. Well, I'll add that to the grocery list. Did you happen to test them raw? I love raw turnip sticks, but assumed they were starchy, so wrote them off years ago.
Thanks for the tip!

Hi Megan, finally got report from Rheumy - In the report it said that I have spondylitis (they are undecided whether it's PsA (and this was after been told by Rheumy herself I had PsA) or AS) - She is holding back whether she will start me on Enbrel, until I see the MS doctor. She wants the Specialist for Porphyria - to decide whether I have Psoriasis or Porphyria or both. I have been diagnosed with Psoriasis going back 37 years - I am not in flair and only have minor spots. As for the Porpyria, as it is genetic, and I have multiple chemical sensitivities, and unexplained liver problems, the Rheumy believe there is possibility.

I went to my new urologist. He surprised me - knew nothing about Porphyria - told me to stay away from high carb diet and follow high fiber diet. Told me to take meds I am allergic too. Basically told me I was a idiot for following diets (for blood pressure, diabetes, cholesterol etc. said noutritionist would be the person I see, to get healthy. Didn't get to tell him I have been to many different Registered Noutritionist - who have told me that they can't do better with the diets I have to follow.

I was at my NP/MD who informed me - my blood work for toxic metals went astray. So I am getting no where fast. He is now thinking that Porphyria is likely possibility and has ordered 24 hour urine test. Wants me to try more meds (I tell him okay, I will try - until huge bumps in mouth and on head show up).

Hope you get answers faster than I am getting them.

Hugs
Gerri