Five and a Half Years Down the Road

[Tiffari]

Hey, everyone. :)

I'm Tiffari, and I'm new here. I'm currently nineteen years old, and I've been undiagnosed for five and a half years. When I was fourteen, I received a tetanus-diptheria shot, and my reaction was so severe that I almost died. I was completely bedridden for about six months and didn't get up much for an additional two months. I dealt with temporary paralysis, severe emotional problems, respiratory issues, and quite a few other things. My muscles were so weak that they couldn't hold up my ribs and other bones. I couldn't breathe well and still suffer from oxygen deprivation. I was in amazing shape before, and was one of the fastest swimmers in my age-group in the state that I lived in. Obviously, I couldn't continue swimming. I couldn't do much of anything. It was crushing.

For two years, I was misdiagnosed--grossly. I was told that I had vocal-cord dysfunction at one point, and that was obviously not true. I've never had any problems with my vocal cords. I received several other diagnoses, all of which were just...wrong. Of course, as such, I didn't get any treatment that helped. Five years down the road, I moved to North Carolina, and hoped that the doctors here would be able to give me some answers. I paid a lot of money to get tests run, and...there was nothing that they could tell me.

Since the doctors haven't been able to help, we've been conducting our own research. We've actually been doing it ever since I got sick, and we're 99.9% certain that I have (or had) Guillain-Barre Syndrome. If that's the truth, then it's too late to get a diagnosis now. If it had been caught right away, I could've gotten treatment, but it wasn't. If it's something else, then I just don't know what it is, and no one else does, either.

Thankfully, at this point, even though I'm still in pain and still have breathing problems, I'm able to live my life rather normally. I'm going to college, and am able to walk around campus without falling apart. I've been working the whole time, and I even played amateur soccer lightly for a short period of time. (I was terrible, but that's not the point, haha.)

I'm so, so tired right now, so if this post sounds bitter, I apologize. I'm half-awake. ^^; I really am not bitter about it. It's been a learning experience. If it hadn't happened, I would be a very different person today, and I don't think that I would've been a better person. Still, it's been hard living without a diagnosis. Really hard. People don't believe that I'm actually sick. Without a diagnosis, there's no way for them to understand, and I get that. There's no way for me to really understand, either. But, that's just life, and I can either let it beat me, or just learn to live with it. I can live with it. :)

Anyway...I'm a writer, and I'm working on a book about my experience living with an undiagnosed illness. As a side-note, if anyone here is comfortable with it, I would love to include your stories, as well. I'm not planning on making ANY profit on this book, if I ever get it published. Any profits would be donated to charity. I just know how hard it is to live with something like this, feeling misunderstood and alone, and I think that more people need to be aware of issues like this. I didn't even know that this site existed, and I think that it's a great thing. :)

I'll look around and post more, but I'm falling asleep now. (Hypoglycemia, chronic fatigue, and oxygen deprivation, oh my!) Thanks for putting up with this wall of text. :D

[New28]

Hi!
For those of us who are also falling asleep, please explain? What makes you think you have it right? Did you suggest it to any of your doctors?

[Tiffari]

Hi! <3

What makes us think that I have GBS is basically just the fact that I have each and every symptom of it. When I would deal with paralysis, it was always ascending paralysis, which is a main component of GBS. Also, I started having symptoms two days after getting a TD shot, and it's actually now in the fine print on TD shots that GBS is a possible side-effect.

We have mentioned it to doctors, but they keep denying that the shot could have done this to me, regardless of all of the evidence. They omitted certain things from my records, as well. It's been a really awful process. We had one doctor who admitted that it makes sense, but she knew that it was too late to do any testing for it. I've been to SO many different doctors; I can't even remember how many at this point.

I've also seen a lot of chiropractors, homeopatic doctors, and other alternative medicine providers. They've helped me far more than anyone else. I still have a lot of nerve issues and breathing problems, but I've learned to deal with it, for the most part. Not having a real diagnosis is still hard, but I'm just trying to do my best with it.

[Samantha]

  to the forum Tiffari

I'm so sorry to hear yet another undiagnosed person  there are so many of us out there.
I personally think after time you do have to try to live as normal life as possible (obviously with restrictions )

Thanks for sharing your story  I don't know about you but I will NEVER give up with my search because I KNOW I will be diagnosed correctly one day, and it will be because of my research and with the help of a interested Doctor   

 
Sammy

[Jenny]

Welcome Tiffari :)

 

I'm so sorry that you're going through all this pain. I'm also 19 and am a university student with an undiagnosed illness. It's hard, isn't it? Colledge is stressful enough without having THIS on our plates! I am also almost 5 years undiagnosed. My symptoms are slightly different than yours, but my problems also started after taking a drug..birth control. If you need university advice on how to deal with being an undiagnosed student, I'm here LOL.

Jenny

PS. If you'd like, I'd be glad to share my story in your book!