Discussions By Condition: I cannot get a diagnosis.

Porphyria or Fibromyalgia? PLEASE HELP im at the end of my rope!

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Porphyralgia
  • March 14, 2009
  • 03:15 PM

(NOTICE: this is a very long post) Hi, im 15 and have had serious medical problems for 2 years now. recently I was diagnosed with Fibromyalgia

but after going back and looking at the top 3 diseases/illnesses that I thought I could have had (before being diagnosed with Fibro) I have concluded that I dont have Fibro

ill explain in a moment, but first:

Sypmtoms:

- Raised Rashes that burn, itch ect but only last a matter of seconds or minutes. They happen fairly often

- Headache, mild or severe, Seizures and pressure in my eyes

- Facial Flushing

- Double or blurry vision

- Flashing lights when I stand up (id say it happens 50% of the time whenever i stand up)

- Diarrhea and Constipation

- Upset stomach (nausea or pain) at all times

- Bone pain, joint pain or swelling

- Stiffness of joints

- Muscle pain, extremely bad in the right leg and also bad in left leg, arms and almost my whole body

- Shortness of breath, I can't ever get a full breath

- Chest pain, electrical shock pains starting from my arm pits and go to the center of my chest. they happen often and i feel winded when it happens

- Heart palpitations or extra beats, skips beats, and is CONSTANTLY beating extremely fast. Doctors cannot explain it.

- unexplained shaking, Burning and stabbing sensations in the body

- EXTREME fatigue. so bad that i lay in bed 24 hours a day and can hardly go to school

- Disorientation

- Strange purple marks on my knees

- White blochs on my hands, it looks like when the blood rushes to my hands it doesnt reach many areas and i get all these white dots all over my hands

- Confusion, difficulty in thinking, and unexplained fevers

- weird attacks where my heart rate goes way up, i get a headache, my stomach hurts a lot more than usual and i get a lot of those electrical shock pains in my chest

so as you can see.. many symptoms. I have had 3 ultrasounds on my heart, 4 full body scans, countless blood tests for EVERYTHING. ALL tests have been negative.

some family history: Grand parents had either cancer, heart disease, or blood disorders where thier blood wouldnt clot

I have seen many doctors, I live in Canada and have even had to go to Sick Kids Hospital down in Toronto.

Im convinced that I dont have Fibromyalgia.... and im at the end of my rope. I cant stand living like this, doing horrible in school and in so much pain and fatigued that i cant even walk down the stairs

Somebody PLEASE help, anything at all. Any opinions.... or advice would be greatly appreciated.

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24 Replies:

  • Ok, ill check that out. thanks Anybody else have anymore suggestions? please anything will help!
    Porphyralgia 9 Replies Flag this Response
  • I have alot of the same symptons that you have, I have been to many doctors and they said i have firbro also, I have pains like someone is stabbing me, double vision, I belive there is something other rhen firbro that is causing all my discomfort, I get shocking pains all over my right side, if anyone knows of any illness that would cause this discomfort please help.
    Anonymous 42789 Replies Flag this Response
  • Blaze should have mentioned Lyme disease - have you been tested? It should be thru Bowen or Igenex labs. I don't believe EMF's are causing this problem, Blaze writes this on everyone's post. Are you male or female? Are you taking any medications including birth control, if female? Where do you live? DOM
    acuann 3080 Replies Flag this Response
  • Blaze should have mentioned Lyme disease - have you been tested? It should be thru Bowen or Igenex labs. I don't believe EMF's are causing this problem, Blaze writes this on everyone's post. Are you male or female? Are you taking any medications including birth control, if female? Where do you live? DOM Im Male, the only medication I am taking is Cymbalta (60mg which the doctor said is very high dose) and thats for my Fibromyalgia. I have been tested for Lyme several times, but i dont know where they sent the blood for testing. I have also taken strong antibiotics for a long period of time before to no effect. I live in Canada, Ontario, in Toronto. Before all this started i was a normal kid, went in forests and spent all day bike riding around trails and all that, which is why I brought up Lyme disease to my doctor im still open to the idea that I may have Lyme. Hope this helps
    Porphyralgia 9 Replies Flag this Response
  • But do you have the typical fibromyalgia sore spots? Have any doctor checked this?
    Felsen 510 Replies Flag this Response
  • But do you have the typical fibromyalgia sore spots? Have any doctor checked this? Yes, this is how I got the initial Fibro diagnosis. BUT the nerve complications from Porphyria could cause pressure on spots close to nerves to cause pain which would explain the pain spots (I read up on this but im not sure how accurate it is)
    Porphyralgia 9 Replies Flag this Response
  • My first thought upon reading your post was Lupus. I admittedly don't know anything about porphyria, but after looking it up it just seems so very rare.....Lupus fits but is more common. You say you have had blood work, diagnostically. What was your ANA titer?
    Harmonium 322 Replies Flag this Response
  • My first thought upon reading your post was Lupus. I admittedly don't know anything about porphyria, but after looking it up it just seems so very rare.....Lupus fits but is more common. You say you have had blood work, diagnostically. What was your ANA titer? I was tested for Lupus a few months before i was diagnosed with Fibro. I dont remember the exact ANA titer but I remember the doctor saying the test was negative. Also, Yes it is very rare but I only think I have it because of the change in urine color during the attacks i mentioned in the first post, and for various other reasons. At this point I dont know what to do though..... I dont care if I have cancer...... I just want to know what it is. Not knowing what this is hurts more than the symptoms. I just don't think I have Fibro. Its just a gut feeling.. you know like something is missing? its kinda like one of those things where you just... SOMEHOW you just know... I can't really explain it. But I know its not Fibro.
    Porphyralgia 9 Replies Flag this Response
  • Okay, I'm with you that it may not be Fibro......but......well.....if you could post your test results, we might be able to better help you. Also, one more thing.....have you considered the possibly that it may be "simply" anxiety? All of your symptoms fit with anxiety and/or poor posture......aside from the rash and even then, since you have not really described it, it's certainly possible..........I'm just thinking that at 15 years old....there's still a lot that you may not understand about your body and the processes it may go through that you can only know with time.....anxiety can cause all of this, if you are certain the blood work is normal and you don't have that. I'm just sayin'........ya know, it really messes with the system to be down about something or feel anxiety frequently. Just a thought. :) What do you think?
    Harmonium 322 Replies Flag this Response
  • just don't think I have Fibro. Its just a gut feeling.. you know like something is missing? its kinda like one of those things where you just... SOMEHOW you just know... I can't really explain it. But I know its not Fibro. I am a firm believer in "gut" feelings. I say follow your gut on this. I will also agree with Harmonium, and although I am not an advocate of antianxiety meds, I had a patient who had severe fibro/lupus symptoms and after she started taking paxil, ALL of her symptoms disappeared after three days on this drug. I was quite shocked by this...this may be worth looking into. BTW I am a Doctor of Oriental Medicine, and think acupuncture may be helpful for your symptoms. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Okay, I'm with you that it may not be Fibro......but......well.....if you could post your test results, we might be able to better help you. Also, one more thing.....have you considered the possibly that it may be "simply" anxiety? All of your symptoms fit with anxiety and/or poor posture......aside from the rash and even then, since you have not really described it, it's certainly possible..........I'm just thinking that at 15 years old....there's still a lot that you may not understand about your body and the processes it may go through that you can only know with time.....anxiety can cause all of this, if you are certain the blood work is normal and you don't have that. I'm just sayin'........ya know, it really messes with the system to be down about something or feel anxiety frequently. Just a thought. :) What do you think? I am a firm believer in "gut" feelings. I say follow your gut on this. I will also agree with Harmonium, and although I am not an advocate of antianxiety meds, I had a patient who had severe fibro/lupus symptoms and after she started taking paxil, ALL of her symptoms disappeared after three days on this drug. I was quite shocked by this...this may be worth looking into. BTW I am a Doctor of Oriental Medicine, and think acupuncture may be helpful for your symptoms. Best wishesDOM Hey, I would have responded earlier but I had lots to do. Anyway, When all this started the doctor actually did take a few months where he treated me for anxiety. I believe I was on the drug for about 4 months. It helped a little but the drug im on now (Cymbalta) helps a lot more (also, ill check out the acupuncture :)) . Also WAY before all this started, when I was about 10 I saw a doctor about anxiety because of school, so we have gone down that path quite a bit. But that turns out that I have ADHD. Another thing is I don't remember the name of the drug I was on, it was a long time ago and my memory is pretty bad. I hope this helps, ill answer any questions I just want to get closer to an answer :(
    Porphyralgia 9 Replies Flag this Response
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  • (NOTICE: this is a very long post) Hi, im 15 and have had serious medical problems for 2 years now. recently I was diagnosed with Fibromyalgia but after going back and looking at the top 3 diseases/illnesses that I thought I could have had (before being diagnosed with Fibro) I have concluded that I dont have Fibro ill explain in a moment, but first: Sypmtoms: - Raised Rashes that burn, itch ect but only last a matter of seconds or minutes. They happen fairly often - Headache, mild or severe, Seizures and pressure in my eyes - Facial Flushing - Double or blurry vision - Flashing lights when I stand up (id say it happens 50% of the time whenever i stand up) - Diarrhea and Constipation - Upset stomach (nausea or pain) at all times - Bone pain, joint pain or swelling - Stiffness of joints - Muscle pain, extremely bad in the right leg and also bad in left leg, arms and almost my whole body - Shortness of breath, I can't ever get a full breath - Chest pain, electrical shock pains starting from my arm pits and go to the center of my chest. they happen often and i feel winded when it happens - Heart palpitations or extra beats, skips beats, and is CONSTANTLY beating extremely fast. Doctors cannot explain it. - unexplained shaking, Burning and stabbing sensations in the body - EXTREME fatigue. so bad that i lay in bed 24 hours a day and can hardly go to school - Disorientation - Strange purple marks on my knees - White blochs on my hands, it looks like when the blood rushes to my hands it doesnt reach many areas and i get all these white dots all over my hands - Confusion, difficulty in thinking, and unexplained fevers - weird attacks where my heart rate goes way up, i get a headache, my stomach hurts a lot more than usual and i get a lot of those electrical shock pains in my chest so as you can see.. many symptoms. I have had 3 ultrasounds on my heart, 4 full body scans, countless blood tests for EVERYTHING. ALL tests have been negative. some family history: Grand parents had either cancer, heart disease, or blood disorders where thier blood wouldnt clot I have seen many doctors, I live in Canada and have even had to go to Sick Kids Hospital down in Toronto. Im convinced that I dont have Fibromyalgia.... and im at the end of my rope. I cant stand living like this, doing horrible in school and in so much pain and fatigued that i cant even walk down the stairs Somebody PLEASE help, anything at all. Any opinions.... or advice would be greatly appreciated. Fibromyalgia (FM) commonly coexists with chronic fatigue immunity dyfunction syndrome (CFIDS). The statistics are that 25%+ of ones with FM actually have CFIDS and the FM is only ONE symptom of the CFIDS. and CFIDS studies.. show that at least 50% of those with CFIDS have FM. Most doctors arent familar enough with CFIDS to feel comfortable giving out a diagnoses of it. Part of your diagnoses has obviously been missed if all other stuff has been ruled out. Looking at your symptoms I can also see some other issues you have. Irritable bowel syndrome (IBS).. coexists in both FM and CFIDS patients. Your alternating constipation and diarrhea is most likely IBS. This symptom is usually treated by diet (avoiding the food triggers), taking fibre supplements and by probotics. From your symptoms and the fact I think you do have CFIDS.. check out the symptom list at http://wwcoco.com/cfids/bernesx.html , but I think you also have postural orthostatic tachycardia syndrome (POTS) as part of the CFIDS. ... I think your heart symptom and some of the other symptoms you get are to do with the POTS (but not the CFIDS without POTS can cause these symptoms too .. up to 50% of those with POTS have CFIDS)eg the heart palpitations, chest pain, flashing lights when you stand up (a possible POTS symptom but not a CFIDS one without POTS), Disorientation, some of the shaking, some of the breathlessness and some of the tiredness may all be POTS induced and if that's treated.. the CFIDS may not be as bad. Unfortunately most doctors (even heart specialists) dont seem to know much about POTS.. it took me 10 yrs to get that part of the CFIDS diagnosed. The POTs if you have it as i think you do.. should be treated in some way. I suggest you to check out this mystery diagnoses eposide (there are three parts) on youtube on POTS.. part one http://www.youtube.com/watch?v=NN3PB6N6oGY part twohttp://www.youtube.com/watch?v=I40-r3RpFjs&feature=relatedpart three http://www.youtube.com/watch?v=PHydjGdg4XQ&feature=related (NOTE that a pacemaker being put in for POTs isnt a usual way to treat this kind of tachycardia but the poor lady on that eposide had that done as the doctors couldnt figure out what her illness was at the time). My POTS is being treated by drinking a lot of sports drinks (these boost the blood volume.. i still have POTS but not as bad). (the rashes you have relate directly to the CFIDS and not the other CFIDS coexisting illnesses, FM dont case rashes and as I know POTS dont either.. thou POTs can cause flushing and the blood rushing to your hands.. as the blood pools in body parts)
    taniaaust1 2267 Replies Flag this Response
  • weird attacks where my heart rate goes way up, i get a headache, I forgot to say in my previous post.. that combination of things going on there is the POTS/postural orthostatic tachycardia . In POTS the heart rate goes up on standing to try to push blood to the brain (cause of the blood pooling in other places or low bood volume). It's the lack of blood going to the brain which will give one with POTS a headache. POTS can be diagnosed by tilt table testing.. or on monitoring the person immediately and for a time after standing.
    taniaaust1 2267 Replies Flag this Response
  • Fibromyalgia (FM) commonly coexists with chronic fatigue immunity dyfunction syndrome (CFIDS). The statistics are that 25%+ of ones with FM actually have CFIDS and the FM is only ONE symptom of the CFIDS. and CFIDS studies.. show that at least 50% of those with CFIDS have FM. Most doctors arent familar enough with CFIDS to feel comfortable giving out a diagnoses of it. Part of your diagnoses has obviously been missed if all other stuff has been ruled out. Looking at your symptoms I can also see some other issues you have. Irritable bowel syndrome (IBS).. coexists in both FM and CFIDS patients. Your alternating constipation and diarrhea is most likely IBS. This symptom is usually treated by diet (avoiding the food triggers), taking fibre supplements and by probotics. From your symptoms and the fact I think you do have CFIDS.. check out the symptom list at http://wwcoco.com/cfids/bernesx.html , but I think you also have postural orthostatic tachycardia syndrome (POTS) as part of the CFIDS. ... I think your heart symptom and some of the other symptoms you get are to do with the POTS (but not the CFIDS without POTS can cause these symptoms too .. up to 50% of those with POTS have CFIDS)eg the heart palpitations, chest pain, flashing lights when you stand up (a possible POTS symptom but not a CFIDS one without POTS), Disorientation, some of the shaking, some of the breathlessness and some of the tiredness may all be POTS induced and if that's treated.. the CFIDS may not be as bad. Unfortunately most doctors (even heart specialists) dont seem to know much about POTS.. it took me 10 yrs to get that part of the CFIDS diagnosed. The POTs if you have it as i think you do.. should be treated in some way. I suggest you to check out this mystery diagnoses eposide (there are three parts) on youtube on POTS.. part one http://www.youtube.com/watch?v=NN3PB6N6oGY part twohttp://www.youtube.com/watch?v=I40-r3RpFjs&feature=relatedpart three http://www.youtube.com/watch?v=PHydjGdg4XQ&feature=related (NOTE that a pacemaker being put in for POTs isnt a usual way to treat this kind of tachycardia but the poor lady on that eposide had that done as the doctors couldnt figure out what her illness was at the time). My POTS is being treated by drinking a lot of sports drinks (these boost the blood volume.. i still have POTS but not as bad). (the rashes you have relate directly to the CFIDS and not the other CFIDS coexisting illnesses, FM dont case rashes and as I know POTS dont either.. thou POTs can cause flushing and the blood rushing to your hands.. as the blood pools in body parts) I forgot to say in my previous post.. that combination of things going on there is the POTS/postural orthostatic tachycardia . In POTS the heart rate goes up on standing to try to push blood to the brain (cause of the blood pooling in other places or low bood volume). It's the lack of blood going to the brain which will give one with POTS a headache. POTS can be diagnosed by tilt table testing.. or on monitoring the person immediately and for a time after standing. Hi, thank you very much for taking time to reply. I just thought id let you know that I am aware of your post because I actually have to go do some work. I agree with a lot you have said, and when I get back I will answer in a lot more detail. Thank you again :)
    Porphyralgia 9 Replies Flag this Response
  • Hi, thank you very much for taking time to reply. I just thought id let you know that I am aware of your post because I actually have to go do some work. I agree with a lot you have said, and when I get back I will answer in a lot more detail. Thank you again :)
    Porphyralgia 9 Replies Flag this Response
  • I was diagnosed with fibromyalgia 8 years ago and have most of your symptoms BUT I am now about to be tested for Acute Intermittent Porphyria as I have a family history and have many of the symptoms. Can I say one thing, the electro shock type feelings you are getting are from the Cymbalta. They had me on that for a while and it was the single worst thing I have ever done and took me a good 6 months after coming off it to get rid of the side effects. Cymbalta makes it all so much worse! I would say there is a distinct possibility you have Porphyria as it is so often misdiagnosed. Make sure your doctors check it out.
    Anonymous 42789 Replies
    • August 13, 2009
    • 09:22 AM
    • 0
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  • I've got acute intermittent porphyria in my family and have experienced many of the symptoms all of my life. I've learned that the only place that will accurately test you for porphyria is the Mayo Clinic. They have a porphyria research lab and know more about porphyria and will answer your questions by email if you contact them. Labcorp did my porphyria testing and did not follow the very strict guidelines for testing. Your test specimens must be protected from any exposure to light. I've, also, been diagnosed with lyme disease, erlichiosis, babesia, and bartonella. Already knew in 2008 that I had a high antibody level for Rocky Mountain Spotted Fever that indicated current or past infection. My doctor ignored these results for three months.After being diagnosed with Paranoid Schizophrenia at the age of 53 (what a joke!), Major Depression with Psychotic Features, PTSD, Hypothyroidism, gastrointestinal problems, have had four teeth pulled because of mouth problems, have had small growths removed from my salivary glands and 12 nodules removed from my breast, and had a laparascopic sygmoid cholectomy (which removed 1 ft. of my colon), I found out that I have chronic lyme with multiple coinfections.Lyme tests are highly inaccurate. You can get a better idea whether you're dealing with lyme by checking out Dr. Burrascano's most recent Lyme Treatment Guidelines at the following URL:http://researchednutritionals.com/FactSheets/Burrascano's%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdfDr. Burrascano's guidelines, also, have several pages of symptom listed that will aid you in determining whether you need to see a lyme-literate MD. There are very few doctors today that believe in or understand the science behind lyme disease and how the spirochetes can inhabit any part of your body causing a myriad of ever changing and worsening symptoms.All of the symptoms you detail above could be related to lyme and its many coinfections.You might want to contact one of the lymenet organizations and request the name of a LLMD in your area. They know how to put the pieces of the puzzle together. I've seen a psychiatrist, an infectious disease specialist (what a waste of time), a neurologist (bigger waste of time), numerous counselors and two primary care physicians,only to find out the the ***l I've been experiencing for the past 4 1/2 years is due to lyme disease and multiple coinfections. Best of luck to you.
    Anonymous 42789 Replies
    • October 22, 2009
    • 08:38 AM
    • 0
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  • HI my name is Nancy, I also have the symptoms you have.Let me tell you it is horrible not knowing what you have. i have been sick for many years, finally i may be on my way to some answers. The pain is terrible i never really feel good.I always suffer from nausea, stomach pain, headaches pain all over my body.have you been checked for phorphyria, yes it is very rare, but guess what alot of people have it and dont even know it.I came ouy positive in a 24 hr urine exam.And still they have to make sure following up with a hemo doctor.You see you have to be having a accute atack for it to show up in labs.So please insist yo be checked out for phorphyria. By the way they had also diagnosed me with fibro.Phorphyria is very serious alot of meds can make it worse.Alsoany alcholic drinks. Yea i also have to stay in bed for days at times. I really know how you feel. So please follow up with the phorphyria issue. please stay well!!!!.
    Anonymous 42789 Replies
    • February 22, 2010
    • 07:34 PM
    • 0
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  • Okay, I'm with you that it may not be Fibro......but......well.....if you could post your test results, we might be able to better help you. Also, one more thing.....have you considered the possibly that it may be "simply" anxiety? All of your symptoms fit with anxiety and/or poor posture......aside from the rash and even then, since you have not really described it, it's certainly possible..........I'm just thinking that at 15 years old....there's still a lot that you may not understand about your body and the processes it may go through that you can only know with time.....anxiety can cause all of this, if you are certain the blood work is normal and you don't have that. I'm just sayin'........ya know, it really messes with the system to be down about something or feel anxiety frequently. Just a thought. :) What do you think?That is complete rubbish to tell someone it could be anxeity. You really sound just like all of the other doctors out there. Anxiety does not cause severe pain to the point that he cannot even walk down the steps. Dude - do not listen to this guy. What you have does sound like what so many other people with Fibro, but it could be other possible things. I only want to wish you the best and make sure you DO NOT listen to someone who tells you, oh it could be anxiety. If you are so fatigued, and in so much pain, there is definitely an underlying reason and keep up with the testing. Do not accept a diagnosis if your body is telling you there is something more. This is you life you are talking about, and if there is a serious problem, you want to find and treat it. My prayers are with you.
    Ballad7 1 Replies
    • February 26, 2010
    • 10:02 AM
    • 0
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  • A magazine I get in the UK. Nexus (science, unexplained, medical oddities (cover ups too) are in this magazine (I think Nexus magazine) possibly available elsewhere in the world too). Has a very interesting article, it is suggesting that due to an error in classifying Porphyria, it is not rare at all, its thought now to be about 20% and is suggesting can be responsible for conditions like Fibromyalgia, CFS (M.E.), multiple chemical sensitivities, even Altzheimers depends on how the condition affects the person. It makes alot of sense to me. I have Fibromyalgia dx'd by a Fibro specialist, but I also have lots of other problems too, Allergies, intolerances to foods, **g smoke, certain chemicals including those that come from hot water when coming though a shower head (knocks me out!) also have Thyroid problems (T4 levels normal in blood test results (common result and therefore missed problem in fibro sufferers), but seems body can't make the useable T3 from it or doesn't made good use of whats produced (no-one knows which is the exact reason, but T3 tablets work. I have asthma, hayfever, problematic ladies 'issues' right from young, don't now as had op to remove the problem, I have irritiable bowel and bladder, sciatica. but also have twists to my spine in several places from accidents that triggered off my fibro but took 8 years to dx me. There are some 50+ fibromyalgia symptoms and getting 95% of them over the course of the average week, some are permantly there like the pains, but I get blurred vision, double vision. since Fibro affects the muscles of the body and the eyes have muscles in them, it stands to reason they will trigger sight issues that can change hour to hour even.For males with Fibro it seems they either get it mildly or very severely, rarely somewhere between. So if future finding prove Porphyria to be the cause of fibro in all or many cases, as well as the other conditions I listed (plus others I didn't) then maybe they can start to get closer to a better treatment for those with the conditions, and ultimately a cure one day.But one things for sure how many other "rare" labeled conditions are their, that are alot more common. 20% is 20 people in 100, or 1 in 5 people!!However unles you are in the middle of a Prophyria flare up and can drag yourself along to get a blood test done on such a day, due to the pain and symptoms a flare up causes, it often isn't detectable when their is not a flare up, so not visible in your day to day average symptoms. I myself am on Transtec Patches, Temgesic tabs, Quinine sulphate for restless legs, Liothyronine (T3), anti histamines, asthma meds. Meloxicam (anti inflammatories) ometimes use a tens machine, have a back support/lower spinal support too).However if you are not happy, with your dx, then push for more checks, tests and maybe if you can get the most recent issue of Nexus New Times magazine, have a read of that, there are a few pages worth of reading and its not a glossy mag, so not full of photos. (or see www.nexusmagazine.com for more details about the mag, you can order just the article from them too for about $1.50 not sure if thats online reading or it their is any shipping costs too if its a paper copy)best of luck with your getting to the bottom of whats making you so illAowlanUK
    Anonymous 42789 Replies
    • December 24, 2010
    • 10:28 PM
    • 0
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