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Jan 09, 2012 in the Rare Diseases Community - 7
I have Hereditary Corproporphyria, which is very similar to AIP and have acute attacks as well. I am also symptomatic when I am not having an attack and it rendered me unable to work. I would love to compare notes or share information. The disease is so rare, it's very hard to find support. My mom had the disease and died from it at age 54 nine years ago...
Jan 09, 2012 in the Rare Diseases Community - 3
Thank you very much for taking time respond. I had not heard about the beta-carotene supplements or choroquine. I will try them. I try to keep hydrated, but chronic nausea/vomiting thus leaves me chronically dehydrated, in which I receive IV fluids. I attempt to manage my glucose and carb intake, which helps somewhat. The severe attacks are random, but I am s...
Jan 01, 2012 in the Rare Diseases Community - 3
Is anyone out there dealing with one of the forms of porphyria. I have Hereditary Corporporphyria and am almost always symptomatic, with sporadic sever attacks that cause seizures (along with a host of other fun symptoms) and land me in the Er or hospital. I need some support....it's extremely rare and I am struggling. It's a neurological disease, m...
May 19, 2010 in the Neurology Community - 4
Hi there, Sorry you are having such severe pain. Does the pain feel at all like nerve pain? Like very sharp and stabbing? Does it ever travel down your inner thigh toward your knee? Also, is it intermittent or constant and worsen with certain activities? Is Relafen a pain medicine?
Jun 02, 2009 in the Hepatitis C Community - 4
Hi Dina, Thanks for your post. I just realized, after reading this, that I experience the same thing. For example, today I have the shooting pain, my upper abdomen is bloated, and my BP was pretty high at the doctor today. I have never realized there may be a connection. I just finished up treatment, so my body is a mess right now, but this is something I ...
Mar 22, 2009 in the Hepatitis C Community - 13
Hi Michelle, Glad you got on an AD. I think you will start to feel better soon, although I don' t know much about the one you are taking. Check your company's and state's FMLA policy....here in NV they don't have you pay you while you are on FMLA, but they have to pay your insurance premiums for up to 12 weeks and guarantee your job.....
Feb 06, 2009 in the Hepatitis C Community - 7
Hi all, I had had pelvic and abdominal scan in Dec that revealed inflammation or tumor in my right groin. Since then, my left groin area has be come painful and I can feel a grape sized knot. I had my doc check it out. I also have extremely swollen lymph nodes in my arm pits and into my breast tissue on both sides, but its worse on my left. It is very painf...
Jan 31, 2009 in the Hepatitis C Community - 8
I am about 2/3 through TX and have eye issue from the get go. Extreme sensitivity to light, TV light, even too much of a computer monitor causes me pain. I started to notice some real vision changes around week 19, turn out it was just eye strain. The muscles behind my eyes were so fatigued, it was causing me to squint and read everything at close range. I ha...
Oct 09, 2008 in the Hepatitis C Community - 20
Wow...this is the first I have seen on near seizures/tremors, and early Parkinson's. I just saw my doc today about similar problems (severe limb, torso, and head jerking) along with other neuro symptoms. I have been trying to determine if they are just extreme SX or something neurological. They did some prelim blood work and are referring me to a special...
Oct 09, 2008 in the Hepatitis C Community - 11
Hi there Scruples, Interesting...I would like to know what you find out. My ALT went from 42 (week 9) to 58 in week 12. Both are nominal compared to where I started, but it does seem odd. My Viral Load went down from 3.6 million to 252 at week 4, so I was surprised my enzymes went up recently (as of 9/24/08). I am waiting on my 12 week VL test now. I don&#x...