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Snap, Crackle, Pop: An Update and an Apology

Shurukian

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It's been a year and a half now since I've posted an update to the condition I have. For those of you that haven't read my first blog entry about this, I have a disease called Tietze's Disease. As I said in the last entry, I was diagnosed shortly after Christmas in early 2008, though I developed it many years before. Tietze's disease is a very rare disease. In basics, everyone has an underlying tissue, called the myofascial tissue. Think of it like a giant net around your body. For most, this stretches and moves, however, for Tietze sufferers, the tissue tightens up and doesn't stretch much. It's extremely rare but very commonly misdiagnosed, and sometimes masks tumors, heart attacks, heart dysfunctions, and lung problems.

As I said before: because of this, my rib cage doesn't move much, which limits the oxygen I take in. But I know a lot more about it now then I did before. For example, my skin in general doesn't move as much as normal people's. When you touch the skin on your arm right now, it should have an inch or two of give to move around. Mine skin moves maybe a half an inch. My muscles don't develop as fast as others. It takes me a few months to get strong enough to climb a grade above, when almost all other climbers can train for a few weeks. If you press hard and run your fingers up my shins or forearms, you can feel tight tissue balled up, like small hills. Same along my breast bone. You can't see them, but you can feel it. They've been causing random pains throughout my arms, legs, and chest.

The biggest new symptom, however, is my memory. I forget enormous amounts of information. I can't remember valentines day last year. I can't remember my schedule from last semester, even though it was only two months ago. I can't remember almost all of my junior and sophomore years of high school, including the two year relationship I had with my first boyfriend. Sometimes, I'll even forget what my best friends or family looks like. My memory problem has been a recent issue, that started very slowly just before the summer and spiked the past six months. Of course, this coincided with when I got back from Tahoe and became active on IRC again. Many people have messaged me to talk about old stories, past events, or just say hi, and I've had to tell many of them that I didn't know what they were talking about (and in a few cases, that I didn't even remember who they were). I'm really very sorry for this, and I'm hoping you guys will stay patient with me while I try to get this issue under control or see where it goes. It seems to ebb and flow: just when I think it's getting better, it turns around on me. It's created an entirely new obstacle with school.

These issues are not ones that are thought to be commonly associated with Tietze's. If you read most definitions of the disease, it's mainly thought to only affect a certain part of your ribcage joints. Because of this, I've reached a new thought...

I'm pretty sure I've been misdiagnosed.

When I was diagnosed with Tietze's, it was by a physical therapist in her 60's at Hershey Medical Center. I had been there for fifteen minutes. It seemed like a miracle at the time, but now I wonder if it was just an easy label. She spoke of seeing many people with this problem, but most research says there's only been slightly over a hundred correct diagnoses of the disease in the past fifty years. I'm all set to believe that number is very low, but I can't believe that an extremely rare disease blossomed overnight. Also, I've seen my medical charts. Tietze's isn't listed on it. Even though most doctors in the United States have no idea what Tietze's disease is, I would think it would at least be listed on my medical charts if I was diagnosed. I always have to remind the doctors that I see that I have it. Being misdiagnosed holds a different set of worries for me though: One, do I have something worse? And two, I'm going to have to go through all of those horrid tests again if I want to challenge this. With it taking two years of neverending doctors just to get a Tietze's diagnosis, I'm not thrilled about that idea.

I mentioned in the last entry about this that most people grow out of Tietze's, and a handful don't. It's supposed to be a short duration syndrome, that clears up after six months to a few years. With this going on six years now and only getting worse, I think it's safe to say that I won't be growing out of it. Unfortunately, there's still no treatment, and the research on it is still non-existent. Nevertheless, I still know that it could be worse. I'm alive, I'm functional, and it doesn't prevent me from doing things I love, it only gives me more obstacles to work through. Is it a little intimidating and worrisome? Yeah, it is. But it's pointless to think negatively about it when I can't change it.

I made a major achievement this summer. I climbed a 80 foot, 5.10a route (up there in the hardness level) at 6,000 feet. My house at home is at 200 feet. It was a huge event for me, and I didn't even realize the grade of what I had done until I got home. We had thought the climb was much easier. It was longer and harder than anything I'd ever climbed. So no matter what, nothing's holding me back.

“When you reach the top, keep climbing.”

69475_493869309552_650544552_6780505_740257_n.jpg

The Left Seam - 5.10a



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I never knew from talking to you Shuru. I would give you my sympathy but you're not the type that would accept it and I'm not the type who would hand it out. You're much stronger than that, and I'm confident and hopeful you'll overcome whatever ailment you have. Keep living your life.

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A musculoskeletal condition affecting the brain, of all things? Either there's more to the condition than what's on the Wiki page, you've been misdiagnosed, or the oxygen deprivation from the tightness in your chest is very, very serious. Definitely worth talking to your doctor, seeing if there's a test specific to the condition, and trying to figure out if there's other conditions that could cause both symptoms or if you have two separate conditions. Some doctors will feed you the "trust me, I know what I'm talking about line, but they aren't you and don't have a full understanding of what you're experiencing; don't let up on them until you have some answers.

In my (non-expert, mind you) opinion, you could get the oxygen-deprivation theory ruled out by getting your O2 sats measured, both while awake and while asleep to see if your brain is getting enough oxygen. A CT and/or MRI would also be helpful in getting a look at your brain.

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A musculoskeletal condition affecting the brain, of all things? Either there's more to the condition than what's on the Wiki page, you've been misdiagnosed, or the oxygen deprivation from the tightness in your chest is very, very serious. Definitely worth talking to your doctor, seeing if there's a test specific to the condition, and trying to figure out if there's other conditions that could cause both symptoms or if you have two separate conditions. Some doctors will feed you the "trust me, I know what I'm talking about line, but they aren't you and don't have a full understanding of what you're experiencing; don't let up on them until you have some answers.

In my (non-expert, mind you) opinion, you could get the oxygen-deprivation theory ruled out by getting your O2 sats measured, both while awake and while asleep to see if your brain is getting enough oxygen. A CT and/or MRI would also be helpful in getting a look at your brain.

The condition prevents me from any type of cardio exercise, so any time I jog for longer than thirty seconds, I end up breathless and tired. I'm not sure what level of oxygen deprivation would be necessary for memory loss, but that was my hypothesis. I haven't explored those options, so I'll look into those. Thank you, Locke. :)

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The condition prevents me from any type of cardio exercise, so any time I jog for longer than thirty seconds, I end up breathless and tired. I'm not sure what level of oxygen deprivation would be necessary for memory loss, but that was my hypothesis. I haven't explored those options, so I'll look into those. Thank you, Locke. :)

I don't think there's a specific level that causes it, but prolonged de-oxygenation of the brain can lead to cell death, which is why getting the sats tested and brain itself scanned would be a good first step in diagnosing what causes the memory loss. And glad I could help. :)

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I don't think there's a specific level that causes it, but prolonged de-oxygenation of the brain can lead to cell death, which is why getting the sats tested and brain itself scanned would be a good first step in diagnosing what causes the memory loss. And glad I could help. :)

Low oxygenation can indeed cause cell death,however, a good thing is that the hippocampus, which is one of the most important sites for memory,

Has neurogenesis even during adulthood. This mean that new neurons can be generated. Therefore, in theory low oxygenation can increase cell death inthehippocampus, however, reestablishement of proper oxygenation might revert the effect.

Best wishes man.

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My father started having similar memory loss issues due to lack of oxygen, he started losing motor control as well. He didn't have as severe memory loss as what you've described but it sounds like you have been fighting this for quite a while. He ended up in a coma, diagnosed with AIDS, and it was liquid in his lungs causing the lack of oxygen due to his body not being able to fight off the pneumonia he had. Not saying this is your problem but its definitely a serious issue, if lack of oxygen is the cause of the memory loss.

I have never talked to you before, but your story is extremely inspiring to me. My father fought tooth and nail, got out of coma, is taking meds and enjoying his medical marijuana doctors note. :smug: You are a fighter for sure and never give up. You are probably doing more with your life, given the limitations than most of us, I know I've never been rock climbing and I wish you the very best from the bottom of my heart :wub: and I hope that you can get a proper diagnoses, if it has indeed been mis-diagnosed.

Where the heck is the real life Dr. House when you need em!

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Best of luck with this illness.

Hope you get correctly diagnosed soon.

I sort of doubt that there is enough deoxygenation to cause cell death in the brain, and if that really IS the case, my non-professional advice would be to discuss this with a competent doctor. Cell death can also cause loss of motor skills, and other important skills that are needed for life.

Either way, best of luck with this, I do have a couple immediate family members suffering from severe, incurable diseases, so I sort of know where you are coming from.

Keep fighting the good fight. :)

Sincerely,

Abdur

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I don't think there's a specific level that causes it, but prolonged de-oxygenation of the brain can lead to cell death, which is why getting the sats tested and brain itself scanned would be a good first step in diagnosing what causes the memory loss. And glad I could help. :)

Low oxygenation can indeed cause cell death,however, a good thing is that the hippocampus, which is one of the most important sites for memory,

Has neurogenesis even during adulthood. This mean that new neurons can be generated. Therefore, in theory low oxygenation can increase cell death inthehippocampus, however, reestablishement of proper oxygenation might revert the effect.

I sort of doubt that there is enough deoxygenation to cause cell death in the brain, and if that really IS the case, my non-professional advice would be to discuss this with a competent doctor. Cell death can also cause loss of motor skills, and other important skills that are needed for life.

Sincerely,

Abdur

I never knew a lot of this. Thanks guys. One of my professors that studies memory raised the idea that I may not have a retention problem, but a recollection problem. For example, if you explain a prior event to me in shallow detail, I'll usually remember it and be able to fill in the rest of the details. It's not completely gone, I just need prompts to remember it. I'm wondering if the lowered oxygen would be enough to cause that. I'm realistic that the memory problem is possibly independent from my other problems, but I don't want to jump to the conclusion that I have two conditions right now, so I've been trying to see ways that they could be related. And thank you guys for the information and the well wishes.

I have never talked to you before, but your story is extremely inspiring to me. My father fought tooth and nail, got out of coma, is taking meds and enjoying his medical marijuana doctors note. :smug: You are a fighter for sure and never give up. You are probably doing more with your life, given the limitations than most of us, I know I've never been rock climbing and I wish you the very best from the bottom of my heart :wub: and I hope that you can get a proper diagnoses, if it has indeed been mis-diagnosed.

Where the heck is the real life Dr. House when you need em!

I could say the same. Your father's story is inspiring to me. While I never plan on getting medical marijuana,(:P) I know how important it is to develop ways to deal with what you can't cure. I think sometimes it takes events like this to appreciate every moment that you're healthy, and strive to do everything you can. Thanks so much for the story and the words. :) And my family and I say that about House all the time. XD

Good luck Shuru. You know you always have support here when you call upon it. :wub:

:wub: Mia. :)

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I know how annoying it can be to go through all the poking and prodding from doctors who don't seem to have any idea what is wrong with you. It's something I suppose you just have to push through and look to the future. With that said, I wish you the best of luck. I'll send a nuke to funn just for you.

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I know how annoying it can be to go through all the poking and prodding from doctors who don't seem to have any idea what is wrong with you. It's something I suppose you just have to push through and look to the future. With that said, I wish you the best of luck. I'll send a nuke to funn just for you.

Awww, thanks Jack. :wub:

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