tag:blogger.com,1999:blog-4567963285616748820.post1765823738973791250..comments2023-10-22T22:43:38.735-04:00Comments on Porphyria: A Royal Pain In My Ass: A Big Thank YouUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4567963285616748820.post-84667185544008608462014-02-10T09:17:14.759-05:002014-02-10T09:17:14.759-05:00Also for years I had the following drugs listed as...Also for years I had the following drugs listed as allergies on my medical records. As I had bad reactions to them. During my Internet search I found they are all porphyria triggers.<br /><br />Norflex<br />Benadryl<br />Amitriptylene<br />Tramadol<br />Soma<br /><br />And of course I am forgetting the rest. I have really bad troubles remembering anything. I.can read something ten times in a row. Then try to remember and it will be a blank...sorry.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-91296610908692860322014-02-10T08:53:13.542-05:002014-02-10T08:53:13.542-05:00Hello I have stumbled upon your page. I have had m...Hello I have stumbled upon your page. I have had many strange health issues that started at age 25. I remember the day...restless tingling legs in a movie. Since then have had many other things develop. Have seen many docs and all I get is Idiopathic. Yesterday a cousin posted photos of her deceased brothers on facebook. Noting their cause of death. It was AIP. I started chatting with her as I never heard of it. She was willing to share some but not much. They had two kinds of porphyria and she also has. She also mentioned her brothers kids have it. I had remembered my mother saying she had this. But she says she has everything and we are not close. I have looked up symptoms and a number of them match. Where should I start? Primary care doctor? What testing should he do? I am afraid he won't give my concern the time of day. Any advice?<br /><br />Some of my symptoms:<br /><br />Problems breathing up to months after anesthesia<br />Idiopathic poly neuropathy<br />Memory loss severe short and long term<br />Anxiety<br />Shooting pains in legs and back<br />Tremors<br />Severe loss of muscle<br />Hormone inbalances<br />Tired all the time<br />Restless leg syndrome<br />Lots of body aches and pains hard to move...getting worse with time. On pain meds but don't help much<br />Brain fog<br />Sweating a lot started a few years back. I didn't sweat at all until one day when I was about 35...All came pouring out it was very strange and the worst smell ever.<br />Can't stand heat feel like I can't breath gonna pass out.<br />Smells some smells make me feel bad for hours like diesel truck fumes on the highway.<br />Liver functions elevated<br />depression<br /><br />The are just some I am sure I am missing many. Any advice you can give would be appreciated. <br /><br />Thank you,<br /><br />SterlingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-17821488684821015862010-11-10T20:04:54.261-05:002010-11-10T20:04:54.261-05:00Rene's Symptoms
chronic constipation
sensitivi...Rene's Symptoms<br />chronic constipation<br />sensitivity to smell<br />hypertension<br />pain in lower limbs<br />tinge ling in feet<br />weakness in all limbs<br />fine tremors<br />restlessness<br />excess sweating (wake up drenched in puddles of sweat)<br />cold intolerance<br />hands, feet and nose are always excessively cold<br />abnormal fat metabolism<br />paranoia<br />excess hair and fingernail growth<br />premature gray hair (age 11)<br />anxiety<br />brain fog<br />sometimes English sounds foreign<br />migraine headaches<br />eyes are sensitve to sunlight<br />drop foot (right foot asked Dr. N why my foot would turn in sometimes and he did not know)<br />waddle<br />night mares<br />wounds take long time to heal, get infected easily and scars are purple for several months<br />difficulty with anesthesia<br /><br />had chicken pox twiceRene' TIroffhttps://www.blogger.com/profile/14347115006868240901noreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-76665598774251139622010-11-10T20:00:43.886-05:002010-11-10T20:00:43.886-05:00Jan,
y
This is my third attempt to send you a note...Jan,<br />y<br />This is my third attempt to send you a note so this one is going to be short and sweet. Boys saw hematologist yesterday and are being sent to genetics. Docs are convinced that it is a variant form of AIP. I am now in a university setting with Texas A and M.<br /><br />Would love to have you has a friend on face book to be able to share things easier. I must warn you though, I am not exciting and do not post a lot. It would let you see how my family, and it is big, some how lives a normal life. Ok, we fake normal really really really good : )<br /><br />Sending you hugs and wishing you good health,<br />Rene'Rene' TIroffhttps://www.blogger.com/profile/14347115006868240901noreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-1280058622680050652010-11-10T19:55:13.836-05:002010-11-10T19:55:13.836-05:00Jan,
Took the boys to hematology yesterday. He i...Jan,<br /><br />Took the boys to hematology yesterday. He is an asst prof at Texas A and M medical school. After spending two hours with us, he said that "IT FITS" and he thinks that it is a new variant form of AIP. He is sending them to genetics. He said the doctor that they are going to see is brilliant and that she will probably do gene splicing to try to figure it out. It is great to be in a university environment.<br /><br />I don't know if I would recommend going to see the porphyria specialist. I went and saw one of the worlds leading porphyria specialist and he did'nt even look at my records. He said that urine changes color in the sun all the time and that maybe it was my ADHD. I promptly went to my dads urologist who is also an asst prof at Texas A and M and he said "Yes, urine changes color in the sun all the time." I said, "like this?", as I showed him a picture. He said "That is Porphyria."<br /><br />My dad had an attack shortly after that and took his urine up to Dr. Pee and gave it to him. Dr. Pee grabbed all the doc and was showing them. He then asked my dad if he wanted the pee back or could he have it. My dad was more than happy to give it to him. All the residents at the VA Hospital got to see my dads different colored pee.<br /><br />I think you and I should have a masters in peeology : )<br /><br />My symptoms are......<br />chronic constipation<br />sensitivity to smell<br />hypertension<br />pain in lower limbs<br />tingling in feet<br />weakness in all limbs<br />fine tremors<br />restlessness<br />excess sweating (wake up drenched in puddles of sweat)<br />cold intolerance<br />hands, feet and nose are always excessively cold<br />abnormal fat metabolism<br />paranoia<br />excess hair and fingernail growth<br />anxiety<br />brain fog and memory loss<br />sometimes English sounds foreign<br />migraine headaches<br />eyes are sensitive to sunlight<br />photic sneeze<br />partial seizures <br />drop foot (right foot asked Dr. N why my foot would turn in sometimes and he did not know)<br />waddle like a duck when I walk<br />night mares<br />wounds take long time to heal, get infected easily and scars are purple for several months<br />difficulty with anesthesia<br /><br />had chicken pox twice<br /><br />In all of this, I look at the bright side. Yes we are photo sensitive but at least we are not like Dracula. I make sure I wear sun screen during warm weather and seem to do fine with the skin but my eyes still get sensitive.<br /><br />We are also blessed with wonderful husbands. <br /><br />Wishing you health and sanity. Hugs to Jan,<br />Rene'<br />p.s.<br />would love to have you as a friend on face book but I must warn you....I am not exciting and I don't post a lot but it will give you a chance to see my family and how we somehow live a normal life.Rene' TIroffhttps://www.blogger.com/profile/14347115006868240901noreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-73081806142976180492010-11-06T17:25:08.066-04:002010-11-06T17:25:08.066-04:00Rene,
It's so good to hear from you again! Th...Rene,<br />It's so good to hear from you again! That's very interesting about your boys. What type of symptoms are they having that makes the doctors feel like it might be a new type? As I'm sure you've read, my doctors and geneticists also feel mine might be a new type of mutation. I have acute attacks and photo-sensitivity. Please keep me updated! Hope you and your family are doing well.<br /><br />JanJanhttps://www.blogger.com/profile/04474623427506331660noreply@blogger.comtag:blogger.com,1999:blog-4567963285616748820.post-44648877127561238582010-11-05T20:26:20.545-04:002010-11-05T20:26:20.545-04:00Jan,
It is always comforting to know we are not al...Jan,<br />It is always comforting to know we are not alone and we are not crazy as some of the docs would have us believe. <br />I took my boys to a new doctor at Scott and White in Temple TX. They are part of Texas A and M Medical School. The doctors there said that it sounds like porphyria. She thinks maybe it is a new kind. The boys are being sent to hematology. If I ever get the answer, trust me, you will be first to get the info. <br /><br />Hugs and Best Wishes,<br />Rene'Rene' TIroffhttps://www.blogger.com/profile/14347115006868240901noreply@blogger.com