[Homeskooled]

Hi everyone,
Thought I should put something up here as food for thought. It might help other people who will say " Ah-hah! I knew it! I've felt like that for years!" But it also might help others to be persistent and keep up their hope, eventhough things might be looking down in your search to beat DP and DR or something chronic and physical.

As everyone on here knows, I had DP since the age of 16. I'm now 23. I've tried every medicine out there, and I know which ones can help, which ones cant, and what they make you feel like. I understand that everyone's DP is different, but I seemed to have the severe, chronic kind with both DP, DR, and mood swings which wreaked havoc on my life. About two years ago, I began getting a brain fog which turned into severe confusion and a headache which has been perplexing the doctors. It mimics a raised pressure headache, my ventricles have been changing size, and I have the feeling of my brain shifting in my skull. I have had severe stomach aches around my upper right abdomen, and I get dizzy and my nails have turned blue. I've had everything in the book done. The only thing which turned up was hypothyroidism, but I only improved on medicine mildly. Well, about 9 months ago I went to my doctors office and said, " You know Dr. Williams, my symptoms fit the checklist of porphyria. I know its rare, but it pops up in your 20's usually. Would you check out my blood porphyrins?" "No, Steve, I honestly dont think you have that. I'll keep it in mind though". Lets fast-forward. Last week I was in the doctors office with severe stomach cramps and mind-numbing confusion/headache. He finally ran a blood test for porphyria. It came out positive. He ran a 24 hour urine last week, and all seven porphyrin types were elevated. Technically, that isnt supposed to happen. And there are no porphyria experts at my university, so I may have to travel to Boston. My parents were telling me I was crazy or lazy, and some people I knew greeted me with raised eyebrows alot, including priests. But I didnt care, because I know my own body. Honestly, if you think your symptoms fit this, a blood test is inexpensive and worth it. The diagnosis is porphyria. I dont know if my 6 year bout with DP was due to this. It could be, or it might not. But I'm optimistic and at peace with being vindicated. I swear, I'm going to use all this info in my medical practice, and write a book about it all one day. On a happy note, I told my parents last night, and they were pretty sheepish. Finally, the fact that they may be making bad decisions isnt just a subjective judgement - I have a diagnosis which shows them to trust my judgement more. By the way, the title of this post comes from the Madness of King George. He had porphyria as well, and untreated, it can get pretty bad depending on the person. Uni G, you might want to check this out for good measure. Thanks for listening guys, and I'll keep you all posted.

Peace
Homeskooled

 

[nemesis]

Im glad to hear that youre moving forward and on the path to what could potentially be recovery. Best of luck.

 

[university girl]

HS, I am so happy that you have finally solved your problem! This post is quite unnerving though- had you not been the intelligent young lad that you are, your disease would likely never have been discovered. This scares me quite a lot.

 

[enigma]

Now when you say your nails have turned blue, do you mean a blue blue, or more sort of a deep blue-violet (because that's what mine always look like)?

e

 

[Homeskooled]

Dear enigma and uni girl,
By the way, thanks nemesis. This sort of stuff is a process. Enigma, I dont think there is much of a difference between blue blue and violet blue. If you arent a smoker, and even if you are, tell a doc about that. Uni, yeah, most people go on until their mid forties and have many, many hospitalizations before this is arrived at. Whats interesting is that the porphyria may be aquired, instead of the usual genetic form, since in the genetic form your only missing one or two enzymes, and I'm missing at least seven. It can happen through environmental exposure, so we're checking that out. But they think that many chronic illnesses like Gulf War Syndrome, and some chronic fatigue, may result from the body's inability to synthesize its own hemoglobin. Mine seems to be along these lines, so I'll either have to get hematin injections once or twice, or load up on glucose and carbs. Just picked up some glucose tablets at the store, actually. You might want to see if this causes your odd headaches and chronic fatigue like symptoms. If anything improves when you eat carbs, sugar, or drink orange juice, it could be a mild case. You came to mind immediately when I was thinking of people on the site who could benefit from the info. Take care.

Peace
Homeskooled

 

[Guest]

Homeskooled you may recall that I have CFS.
I was diagnosed ten long years ago with post viral syndrome which I later learnt is just another name some doctors give to CFS or CFIDS (American name) or ME (English name).
My CFS and dp in my opinion are not related,although brain fog is a major symptom of CFS and a major symptom of mine.
I've experienced headaches,dizziness and gut dysfunction.One specialist gave me an additional diagnosis of MAV,migranine associated vertigo.

Over the years I've heard of many other disorders including Gulf War Syndrome but I must say Porphyria has escaped me.

I'll do a search but in the mean time would gladly appreciate any information.

Best Shelly

 

[Martinelv]

Good film, the Madness of King George, incidently.

Glad that you've got a diagnosis Homeskooled, and a physically based one at that. I'm not particually familiar with Porphyria but I understand it's 'fairly' easy to treat. Here's hoping anyway. Good luck.