Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I tested positive for Porphyria (!?)

DX day!!! Congrats!

I had just made some comments regarding Porphyria on the TENS thread, before seeing this major announcement here, now I understand that you have an official diagnosis, and why the auto-immune neuropathy theory is so, like, well yesterday!!

Megan, I,m so sorry you have yet another condition to deal with,, I just can,t believe that doctors ignored all your sympton all this time. They need to start LISTENING to their clients.Megan you are a remarable young lady and you will figure this all out.. Keep your chin up. My prayers are with you..BIG HUGS

Megan - you are such a loved personality round here. This is clearly a bitter-sweet discovery - my congratulations and deepest sympathies to you. I did notice 'hair loss' was listed as a common symptom...funny how it all starts making sense now! Good luck, I know you will get on top of this! Felicity

Megan, I know what Porphyria is!!!!!!!!!!

Over the years I have been tested for this disease, because my sister was diagnosed with it. I was told it ran in the family, and that I should be checked. At the time I tested negative for Porphyria. As this disease, I understand is genetic, I am not sure the test would change. At the time only my Urine was checked, no blood work was done.

Over the years my Lupus readings have gone up and down. My understanding of Porphyria, that it is the sister to Lupus. My sister was originally told she had Porphyria because of her allergies to medication. The craziness I have gone through with my allergies to medications, I beginning to wonder again, about Porphyria.

Thinking back now I haven't been tested for Porphyria since 1998, since my Lupus readings started fluctuating. Maybe it's time again. I am also wondering if Porphyria will affect the Lupus readings??????????????

I am glad you finally have a diagnoses. I am sending you many hugs, to help you, in taking your next steps.

Hugs
Gerri

Oh Megan OMG OMG THANK GOODNESS that you know what it is finally!!!

It sounds like another Not fun diagnosis but definitely better to know what you're battling and who the opponent is. I am so incredibly relieved that you finally have an actual answer but now worried too as I have just been reading the eMedicine article There is a long list of meds that are suspected unsafe and/or associated with acute attacks and a link to a longer more comprehensive list too. And it says fasting is a trigger too.

I am sure you're reading up a storm and I am full of new hope for you that you can find a seriously helpful treatment strategy to put this dx in check and have you finally feeling better soon!!!

It kills me you had to go this long without a dx. Every single one of us knew it was not in your head.

Wow Megan I am so emotional over here, just wishing with all my heart that you'll soon have the chance to get this managed and get to feeling well again!

Huge warm (((hugs)))
mig

Oh Meggie, it explains so much! I'm sorry you have this added diagnosis, but hopefully, the treatment for this will make you feel much better. I'm keeping my fingers crossed for you.

warm hugs,

Megan-Glad you found out...I have no idea what it is (I'll have to do some searching) but now that you have a dx, I'm sure you will do everything to combat it.
Good luck with your own research and info gathering and in fighting this.

Thanks Shauna! Now I'm feeling inspired to try some of your recipes.... hehe

Hi Megan
Im so pleased for you that you have a result (not pleased you have it of course) now you can get some treatment and be much better I hope which is what you deserve. Im just going to meet Molly for dinner I will tell her she will be so pleased I know she has been worried about you.
Kevin

I think it's complex carbs that they recommend - slow burning stuff as opposed to sugars. Think this means I'll have to get off my butt and do extra baking. And maybe look at fringe foods... This is going to require walking a fine dietary line, I think.