JAH
Senior Member
- Messages
- 497
- Location
- Northern California
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
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