Porphyria anyone?

[JAH]

Hello friends,

I have been going through a terrible period with my health - three times calling 911 since July, with severe "attacks" where I felt shaky, dry mouth, seizure or convulsion like shaking, spasm, chest tightness and pain, trouble breathing, shortness of breath, neuropathy. Many doctors and tests finding neurological problems- POTs, neuropathies, radiculopaties, and this week testing positive for 3 porphyrins. (Urine test, doc thinks it looks like porphyria, not heavy metals) I know nothing about porphyria, but wonder if other pwcs have it, know about it, have ever had acute intermittent porphyria. I can't do anything except go from bed to couch, walk for a minute and I have shortness of breath, abdominal spasm, tightness in my throat. (My heart is fine, though I have chest pain every day). Fatigue is awful. Very difficult to have one vague misunderstood disease and yet another condition which no one can yet figure out...JAH

 

[camas]

Yes, I've heard of porphyria. Here's a good resource: http://www.porphyriafoundation.com/

I hope your doctors have you feeling better soon!

 

[JAH]

Yes, I've heard of porphyria. Here's a good resource: http://www.porphyriafoundation.com/

I hope your doctors have you feeling better soon!

Thanks camas, site very informative, J

 

[taniaaust1]

Hi, yes Ive heard of it and wondered from what I read about it if I have it.. there are many types of it. Last year or the year before the Nexus magazine had a big article (many pages) on it.. titled something like "CFS or porphyria?" suggesting that many of us have this. Ive no idea if that mag articles are online.. if not maybe some time I could photocopy the article and pm it to you, if I can find where Ive put that mag

 

[sela]

Hello friends,

I have been going through a terrible period with my health - three times calling 911 since July, with severe "attacks" where I felt shaky, dry mouth, seizure or convulsion like shaking, spasm, chest tightness and pain, trouble breathing, shortness of breath, neuropathy. Many doctors and tests finding neurological problems- POTs, neuropathies, radiculopaties, and this week testing positive for 3 porphyrins. (Urine test, doc thinks it looks like porphyria, not heavy metals) I know nothing about porphyria, but wonder if other pwcs have it, know about it, have ever had acute intermittent porphyria. I can't do anything except go from bed to couch, walk for a minute and I have shortness of breath, abdominal spasm, tightness in my throat. (My heart is fine, though I have chest pain every day). Fatigue is awful. Very difficult to have one vague misunderstood disease and yet another condition which no one can yet figure out...JAH

jah, i have porphyria and am looking for a forum to discuss it. i started pr because i just felt fatigued for years. now it has really developed. anyone out there?

 

[sela]

jah,
i was on this forum in 2009 with terrible fatigue. now the porphyria has really developed. i need a forum to discuss this. is anyone else here with this problem?

 

[JAH]

jah,
i was on this forum in 2009 with terrible fatigue. now the porphyria has really developed. i need a forum to discuss this. is anyone else here with this problem?

Hi Sela,

I'm not sure I have porphyria, but I have had elevated porphyrins and attacks similar to porphyria. My genes were negative for it, so if I do have it it is the acquired type. How did you get diagnosed and are you being treated?

Glad you are back on the forum

J