[Homeskooled]

Hi everyone,

As I've posted before, my physical health hasnt been very good lately. For the past two years, my body has been freezing cold, I have had constant headaches, and a feeling like I am going to jump out of my skin. I tend to pace alot and think about, well, nothing in particular. It is hard for me to keep a train of thought in my head. My doctors and I have run the gamut of things, and all that we've really turned up is that my body is not breaking down its hemoglobin correctly. The nasty, poisonous by-products (porphyrins) are accumlating in my body, and also in my brain. Anyways, I had had a raised pressure in my skull last year, and they've done about 7 MRIs on me. The most recent one showed an enlargement of the ventricles as compared to one done about 2 years ago. This is found in a lot of organic brain syndromes, as well as endocrine ones, and porphyria.They are larger, but still within normal limits. I need the doctors to hurry up in diagnosis and treatment. If I am losing tissue, I cant count on being able to regain it. I cant count on my family helping me out if my confusion gets worse . I'm stuck on my own. I saw the psychiatrist in regards to my porphyria related confusion, and he wanted to start me on ADD meds. 2 years ago, my diagnosis was OCD. The two are not always diametrically opposed, but they are very, very different kinds of diseases. There's something fishy going on. And I dont know what it is, and my doctors dont know how to treat it, or dont beleive what I tell them. Everyone is dragging their heels because things are so inconclusive. To get to the point, I'm sort of afraid that I am going to eventually lose my ability to "keep it together" or remain focused and coherent. The general feeling of restlessness, for no apparent reason, that I have had today has made me want to go to the local psychiatric hospital for the weekend. I have never felt this agitated or out of it before. I am trying to see the county health commissioner tommorrow. He has my MRIs as well as my porphyria labs, and is the closest thing to a porphyria expert in the area. If he doesnt get back to me tommorrow, or pooh-poohs the case, I dont have many options left. I'm not actually sure I can make it through the night. If anyone has any advice, I'd be willing to take it. If anyone could send me some prayers and good thoughts, I'm sure it would help. Thanks and

Peace
Homeskooled

 

[Dreamer]

Ditto to what Ms. Cloverstone said.

I'm sorry you're not doing well.

My usual mantra -- get a diagnosis, get the right treatment. You will find it. EDIT:!!! This is NOT something degenerative or irreversible. Don't even go there.

This will get figured out. I'm certain of it.

Sending good thoughts your way.

L,
D

 

[Guest]

HS,

I am very sorry off all you are going through. Really. I do like you a lot, and I think you're one of the most intelligent persons I have met here. I am SURE you will not loose you mind, you're too strong for this. You will get the good treatment and all will be allright. You are in my prayers. Stay calm and get help from good people.

Take care!

Allure

 

[sebastian]

HS,

I don't pretend to be an expert on any of that heady medical stuff, but if you're "losing tissue" or something (ie. degenerative brain disease), it sure as hell doesn't play out in your posts. You're without a doubt one of the more "scholarly" members on here, and i often have to get out my trusty Encarta Encyclopedia just to keep pace.

Anyway...i really don't know...do things like this even exist? I just really don't think i've ever heard anything quite like that. Not that i doubt the intended veracity...only i wonder if you aren't reading too much into all this. I had hemoglobin problems awhile back too, but that was many, many years ago, and to my understanding it more effected blood than anything else (which always gave me a ghastly white hue on my skin, and caused schoolchildren to shriek in horror whilst gazing upon me...on the upside though, the goth chicks really dug it.)

Could this just be another manifestation of anxiety? I mean, while you could have real problems with your hemoglobin, could it not just be a completely separate ordeal? I have an old friend with whom i recently got together with. We drank some beers and read each other's books, and chatted long and dark about abyssmal fears, phobias, and dreams. I revealed to him my whole anxiety/dp thing and, to my surprise, he understood a great deal of what i was talking about. And he told me that he had a recurring anxiety which kept him awake at night. And it was a strange one. He told me that he had a horrible fear that he was "getting more dumber". Now this guy that i'm talking about is quite the intellect. For him to complain about his waning intelligence is like Johnny Depp worrying about his "coolness" fading away.

That night we chatted about everything from literature to science, whilst engaged in the most challenging of chess games. Imbued with drink and nostalgia as we were, it's amazing how lucid and coherent he was. And i remember thinking that if this guy is "losing his brain", as it were, then he still had a long, long way to go before he hit "rabble-level".

Bottom line: It was and still is a foolish little anxiety...just like what i have, just like what all of us have in one way or another.

The problem with responding to you HS is that you come off so irrepresibly erudite that for me to say, "Oh, it's just anxiety", would seem altogether condescending, since i would imagine someone of your intellect has already considered over and over again, all the possible angles, and has come to some sort of rational deduction as to what your state of mind truly is.

And yet, smart as you are, you're still prone to fall into the same mental traps that we all are. We have no objectivity when it comes to that, and yet we think we do.

I'm not a good person to be responding to this, but at the end of it all, i'm sorry you're going through this right now, but sincerely believe that, no matter what it is you think is happening to you, it almost overwhelmingly, probably isn't. Does that make sense? Anyway, good luck, and keep us informed of what's going on. God knows we'll be here for you.

 

[gem]

Homeskooled you are in my prayers and I am glad you reached out here to others. Having an illness is painful and sometimes the kind words of others can be very healing in itself. Life will get better, there will be sunshine again. Give yourself lots of tlc, it is important to be good to yourself. When ill we can expect to much from ourselves and it can make us feel worse. Please know you have friends here who care.

gem.

 

[Homeskooled]

Everyone,
Thank you. All of your comments and good wishes are very much appreciated. Thank you Cloverstone, for your support. Thanks, Dreamer for your well-reasoned reassuring words. Allure, I like you too. Thanks. Sebastian, yes, things like this do indeed exist. You might want to look up porphyria on the Wikipedia if they have an entry for it.It may or may not cause lasting brain changes. Like I said, its an ambiguous disease. I would guess from what you said that you were anemic. Could the anxiety be my own doing? The answer is, probably not. I think that the organic is affecting my thinking, and not the other way around. I'm not a very anxious guy, and when I am, it manifests in my being overly-scrupulous. Since ambiguity seems to be the order of the day for my case, do I beleive I could be misjudging the severity of it? Absolutely. Part of me says this will all blow over, but part of me is just plain having a rough time of it. I'm hoping that in a couple of months it will all seem like a bad dream which I have woken from. As the night has progressed, I've warmed up a little and the restlessness has gotten a bit better. I'll be up for while, though. It feels good to vent something like this. Wish I could hug all of you.

Peace
Homeskooled

 

[Martinelv]

Sorry to hear you are so poorly Homeskooled. My thoughts are with you. Get better soon.

 

[Guest]

Big warm neurological hug for you! I am so sorry you're having this rough time, dear one. You truly are a VITAL contributor here on the board and I always adore reading your posts (whether or not we agree) because, as Sebastian said above, you are so DARN SMART! No way you are losing neural tissue. No way.

If I didn't ask at least ONE psychological question, you'd probably be disappointed in me, grin grin (or really assume the worst and think you're DYING and I am refraining out of sympathY!)

Recently, you went through a very bad experience with your family..the thing about your sister (the Sister) coming to visit and your parents not wanting you there at the same time....basically, rejecting you as a son, as a person because in their minds you are too ill to be welcome in their home.

THAT, my dear one, is hideous. ANd it made me feel so sad for you, and to just hate them, the parents who have no more love than that for such a wonderful guy.

My point? Sometimes when we are suddenly forced to look at how alone we truly are in this world, we may be in for more than we can handle. That experience, that IN YOUR FACE hostility and total lack of support from your parents, might have caused some deep seated anxiety and rage in you - might have brought it closer to the surface.

If so, then what you think is a deterioration might be a regressive anxiety state. Are you taking any benzos? Tell me again what meds you're on.

Love,
Janine

 

[Guest]

Dear Homeskooled,

I agree with what Janine is saying in her post. It was the first thing that came to my mind when I read how you are feeling. Do not underestimate the power of the hurtful things your family is doing to you, eventhough you are 'used' to it and have accepted that this is the way they treat you.
The pain may be so deeply burried, you may not even be directly aware of it.

Love,
Wendy

 

[Homeskooled]

Dear Janine,
Thanks for the neuro hug. Janine, somehow I think that even if I were dying, you'd have me doing some soul-searching regarding my Thanatos.... :wink: I'm just kidding. I take your advice seriously and, although it may not come across in my posts, I see psychology as an important pursuit. I just believe that each approach, including the medical, is only good in moderation, and needs to be approached with a skeptical mind.

Well, to be honest, I used to have alot of rage. Not alot of anxiety, but I had awful mood swings. Looking back on it, like alot of people on here, they DID resemble borderline traits alot. You know - the classic "I hate you, dont leave me." Loved my parents, hated their treatment of me. That summed my relationship up with my parents. Of course, that sums up teenagers in general, so I may be too self-critical. Anyways, these mood swings happened alot no matter who I was around, and brought DP with them. Its what started me thinking that it was neurologically based, since it came in waves with nothing in particular setting them off. When I started getting sick about 2 years ago, I began waking up freezing cold in the morning to the touch. I was forgetting silly things like closing the house door behind me. Any feeling of rage left me. Actually, most feelings just left me. Began having headaches constantly, where it actually felt like the inside of my head was "cold". Was hospitalized with an electrolyte disturbance for no apparent reason. Ever since, I've been close to housebound. I dont respond well to thyroid medicine, but I respond extraordinarily well to sugar. Thus my doctor checking me for porphyria, since glucose stops the synthesis of hemoglobin. Currently I'm not taking any medicines. I take a carb and glucose loaded drink for runners called Endurax, Omega 3 fatty acids, milk thistle, and L-tyrosine for concentration. I probably wouldnt take anything right now, since medicines are pretty much contraindicated with porphyria. Maybe Neurontin, since it bypasses the liver, maybe Wellbutrin since it helps with focus. But I'm trying to avoid that route.

Thats interesting what you said " looking at how truly alone we are in this world". It often strikes me - how do people deal with being alone? Is this why people have families? How do adults fill this gap? Or do they never feel abandoned? Just things I've been pondering in the past several months. Thanks again guys.

Peace
Homeskooled

 

[terri*]

A family of sorts for sure. Homeskooled, I hope you got my prayer pm to you and that you are indeed feeling less anxious.

Sincerely,
terri

 

[person3]

Sorry about this, Homeskooled. I hope you find what it is and very soon.

Janine-

Are we REALLY that alone in the world?