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I feel bad posting this...
Registered: 03-11-2006
Posts: 2
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I feel kind of embarrased and guilty writing this.

I have not been diagnosed with KD. But I am almost certain that I have it, based off of everything I have been reading. And if not KD, something equally debilitating... I'm 25 years old; let me describe my symptoms:

At age 19, I started to take notice of frequent fasiculations. They were not religated to a single part of the body, and really occured anywhere, at any time. At the time, I was covered on my mom's medical insurance, so I went to see a Neurologist. He suggested that it was probably caffeine, and not enough exercise, and that by changing those two factors, I would probably be fine.

I did as he ordered, and SEEMED to have had less fasiculations. They were still there though. I didn't go back to the doctor out of fear. My family was a little worried about me, but I told them everything was fine.

A year or two later, I started noticing I was tiring easily by just doing house cleaning. I would scrub and wash the shower, and afterwards, my legs would quake when standing. Also, my arms would shake if I used them to lean on a wall for example. This was troubling, but I decided to ignore it.

When I was 23 or so, I went in to the doctors office to get an ear canal irrigation. I told the doctor about my twitches and fasiculations, and he scheduled me to come back in on another day. I didn't show up, because again, I was scared.

Fast forward to present time, I'm 25, soon to be 26. I just recently graduated college, and I'm pretty happy about that. I also recently found a decent software programming job. Also happy about that. The symptoms have continued to progress however. Now I'm getting muscle cramps (especially in my lat/back muscles), in addition to the previous symptoms. I haven't noticed any VISIBLE muscle atrophy YET, but general weakness and lack of fine motor control is present. I can't use a track-ball mouse anymore, because my thumb can't move the trackball with good accuracy. In the last couple weeks, on two occasions, I've woken up from sleep completely unable to breath... it was frightening. It was like my airway was completely blocked. I was doubled-over gasping and coughing for air... I didn't know what was going on.

Terry mentioned in his personal story that something similar happened to him. It's really terrifying, and it has caused me a great deal of stress, and caused me to reexamine my health problems, which is why I am here.

One additional symptom I have is shakey legs... squating, bending, and stooping all cause my legs to shake. I basically lock my knees when I bend over, so as not too put weight on my waivering legs...

Now that I have a decent job, and health insurance, why not go get checked out by a doctor, right? Well, here's the frustrating part. I've applied to a program that let's me teach english overseas... it's been my dream to do this ever since I was 18 or so. I powered through boring college classes, and ridiculously difficult final exams... all thinking that one day, it would pay off, and I would get to do this english teaching program in another country.

I even prematurely broke up with my girlfriend of 2 years so I could persue this dream. She was great, and I still loved her when we broke up, and we're still friends... but it was a big sacrifice, and this teaching program is now everything to me; given this sacrifice.

The requirements of the program is that the participants be in good health. Well, as of right now, I can function... do my shopping, do some light cleaning, and everything else one would consider normal. Still, all the symptoms are still there.

I authorized a release of my medical records to this teaching program, so now, I'm afraid if I get diagnosed with KD (or anything else), I will be denied my dream of teaching overseas. Additionally, I believe I will be required to submit a doctors approval and an xray to show I don't have Teburculosis or some other specific contagious disease (I forget the name). Basically, I need to submit a clean bill of health.

So, I can't very well go to a doctor, ask for a diagnosis, and then a few months later (April/May) ask for a clean bill of health. So right now, as I write this... I'm extremely depressed, frustrated, and paranoid.

I'm depressed because if I have KD, I have to give up a lot of the things I was planning in the future. I also broke up with someone I loved, and I'm scared I'll be alone with noone to care for me.

I'm frustrated because I don't HAVE a diagnosis of anything. And I can't get one yet, because my dream of teaching overseas is dependant on a clean medical record. So, although I'm fairly certain I have KD (or maybe another illness), I have no way of knowing for-sure until it's "safe" for me to go see a doctor.

And I'm paranoid about my symptoms... every mistep, every fasiculation, every leg/arm jolt, every cramp... they all cause me to be paranoid, and think about whatever illness I have. It causes me a lot of stress, and I wish I could get it out of my head... but it's there, and it's infuriating, and it's a tough cold reality, and it f*ing sucks!

So now, I'm at a crossroads... do I do something about these symptoms, and give up on my dream... or stay in this horrible unknowing mindset for another 7-8 months, and pursue something I've always wanted to do.

I don't want to be alone. I was SO CERTAIN that breaking up with my Ex was the right thing to do for both of us... but now I just want to be back with her, say I'm sorry, and hope she'll be there for me in the future.

And my job is okay. It pays decently, and I have medical coverage. But it's not my dream. After teaching overseas, I wanted to start my own business... start a family... buy a house. But now I don't know. My job can SUSTAIN me in a state of illness, even though it's not fulfilling. It's not physically demanding (computer programming), and as long as I can type on a keyboard with accuracy, I should be able to do it.

So yet again, another difficult choice. Quit my sustaining job, to pursue my dream? I'll have to find another one when I get back... and who knows what my symptoms will be in 2-3 years? Will I still be employable? Will I still have health coverage? Will I still be alone...

All these questions... so frustrating, so infuriating... I just need to confess to someone, and I hope it's okay that I post this here. I know I don't have a diagnosis yet... and as I said, I feel embarassed and guilty posting here because of that. But I need to tell someone, or I'll go crazy... and I feel better knowing someone out there knows I am suffering.

I'm sorry to burden you all with a tail of my own personal drama, when so many of you are living out your own hardships day to day... but I feel this is the only place I can confess these fears, and not be looked down upon... or pitied... or fussed over... or worried about... or abandoned.

Thank you for reading and listening to my story thus far.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Well, first I want to thank you for sharing your concerns. Coming out of the closet is very difficult for anyone with KD.

My initial concern when I read your post is that perhaps you might not have KD and that whatever you have is treatable. The only way to be certain is to have the DNA test.

Reference my experience with KD, I hid my disease for several years because of my fears of what might happen if my employer, my wife, my friends, my health provider, etc. found out. In the end and hind sight being 20-20, when I finally confirmed the disease with the blood test, it was a relief. I also found that by expressing my health issue to my employer, family, and friends released a tremendous amount of guilt and also released the stress of living a lie (making excuses for my symptoms and for my weakness).

Did I second guess my decision? You bet! Did I at times wish I hadn't told them? Yes! Was it the right choice to make? Without a doubt!

Everyone who has KD has to walk down the path you are currently walking. It is never easy to face the truth, but it is liberating. Everyone has dreams and I found that even though I had KD I could still realize many of them. We don't really know what will happen if diagnosed with KD. The same applies to everyone even if they are totally healthy. Life doesn't promise or guarantee anything and every day we have to live life to the fullest whether we are healthy or not. We don't know what will happen tomorrow. All we can hope for is that we will live life to the fullest extent possible and love and be loved.

My initial recommendation is that you discuss your concerns with a professional. Your counseling sessions are confidential and information cannot be released to anyone without your approval. You need to voice your fears and dreams and allow a professional to walk you through the options and potential consequences. A counselor is best suited to help you discover some of the answers you are asking in your post.

In closing I would ask that you read my first concern at the top of the post once again. And ... whatever your decision, I hope that you have a great life filled with happiness and love.
Registered: 03-11-2006
Posts: 2
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Thank you Bruce.

It may be hard to believe... but about 30 seconds after posting that, my door bell rang, and it was my Ex at the door, wanting to get some breakfast/lunch. I was completely caught off guard, and most of all, so happy to see her. Turns out she called me like 10 times that morning, but my cell phone was on silent, so I didn't realize.

I let her in and quickly closed this messageboard and webbrowser so she wouldn't see... I just wanted us to be like normal.

Anyway, we went out to a restaurant and got some food, and caught up on how we're both doing. I ordered something, but because I was so depressed the last couple days, I barely touched it. I just had no appetite at all. So much for things being like normal. We decided to go to Walmart to buy some odds and ends, and I was happy to spend some extra time with someone... But it was hard for my mind to focus on what we were talking about on the way over there.

I wanted to tell her what I was feeling... and why I was depressed. Eventually we arrived at the Walmart parking lot, and I asked for a cigarette, and told her I had something to talk about.

I couldn't quite find the words... or how to start... I prefaced our conversation saying that it wasn't about our history together, and she seemed a bit relieved about that. I then worked up the courage to talk about my symptoms and depression.

She said she would normally think it was nothing... and probably just stress releated... but that if the symptoms had gone on for so long... maybe it could be something. And she said if *I* was concerned about it, then she knows it's something that is serious.

We talked a bit more, and she started to cry... I felt so bad, unloading all this on her. She's already so busy with school and two jobs, that this isn't what she needs. She offered me some advice, and said I should get a diagnosis despite my plans for teaching overseas.

She cried a bit more, and there was a lot of silence... but best of all, she gave me a few hugs, which is what I needed more than anything yesterday. It was so surreal talking about this stuff.

I had another cigarette, and we went into Walmart, and picked up a few things. The mood was different, but I felt so much better having told someone...

All I can say is that she saved me yesterday. She really did. And it was out of nowhere. So now it's the day after, and I'm still depressed... but at least I know I'm not alone... that I have someone who I can talk to about it.

And thank you Bruce, for your perspective and experience. Your view on life seems correct... but is totally different than what mine is/was. And yes, I'd like to get a diagnosis as soon as possible. I need to think about it a bit more though. But from what I've read about diseases with my symptoms, I haven't come across any that are cureable or even treatable.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Thanks again for sharing. I am happy to hear that you were finally able to share some of your concerns with a loved one.

I didn't want to preach, but I felt that I needed to say something.

There is an old saying that goes something like "When live gives you lemons, make lemonaid." I know that isn't correct, but the point is still the same. You need to make the most of what you have. When you do, you are almost always surprised with the results. You are young (less than half my age). Learn to live with your physical disabililies as they occur and most of all, live life one day at a time without fear of what might happen in the future.

Life is not always fair. Bad things do happen to good people occasionally. Yet, if you leave yourself open to experience love, happiness, and family and friends, life can be pretty fantastic even for people with KD.

Take care and if you are so inclined, join the KDA.
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