I need to vent. I just need to get this out there and I know that there are people on this board that will understand.
I have been seeing a neurologist since February adn at that appointment, he did a full neuro workup. I have decreased reflexes in both of my legs and decreased feeling in both legs particularly in the lower legs.
They ran every blood test in existence and the only thing that they found was a decreased B12 level. They thought that it was a possibility that it could be a contributor but 6 months later, nothing has changed. I was scheduled for an EMG at the end of June, but that got sidetracked because I ended up having brain surgery at the end of june for a completely unrelated issue.
Now, I cant get in for an EMG until October 15th!!!! I am just completely frustrated and at teh end of my rope.
In addition to that, I had a GYN appointment last week and she wants to do a CT scan which i have no problem with (Ive had more than a dozen of these) but if she cant pin point exactly what is wrong, she wants to do an exploratory laprotomy because I am in constant pain and nothing is helping. We know I have PCOS but the BC pills have stopped working. I have multiple cysts that are not going away and we think that is causing the pain and they might need to be removed
I am also having serious stomach problems that no one can pinpoint. And my asthma has gone downhill since my surgery in june so I have to have a bunch of tests again to check my oxygen levels and heart rate when exercising.
I already have multiple diagnosis of Asthma, heart arrythmia, eczema, low IgA, multiple food and chemical allergies and I had a pineal mass removed form my brain in june.
And on top of all of this....I leave for school in less than 4 weeks!!!!!
I admit. I do ask "why me?" a lot. I know that there are a lot of people who are so much worse off than me. But there are days when everything is acting up at teh same time (pain from recovery, abdominal pain, asthma difficulties) that I just sit and cry. I've been living in and out of hospitals and doctors offices for the last 5 years since I was 16. I'm just fed up and frustrated wondering if this is ever going to end. I absolutely love all of my doctors. They are amazing people who actually listen to me adn dont blow me off. But I just can't take another appointment that ends with them saying "we know that something is wrong, we just dont know what" I'm sick of the testing and I'm sick of getting no answers.
And people ask us why we are spending so much money to go to Disneyworld when Disneyland is only an hour away. This is why. We need a VACATION. A real, week long vacation away from our life here. I really do think that vacations are sometimes necessary. I think my entire family is at the point that we need it for our sanity.
Right now I love the saying:
"In the entire span of your life, whatever immediate problems you're facing, it's just a blip on the radar unless you do something that turns it into a defining moment"
I know that I will get thorugh all of this at some point. I know that this is not going to go on forever. But sometimes, it feels like there is no light at the end of the tunnel.
I have been seeing a neurologist since February adn at that appointment, he did a full neuro workup. I have decreased reflexes in both of my legs and decreased feeling in both legs particularly in the lower legs.
They ran every blood test in existence and the only thing that they found was a decreased B12 level. They thought that it was a possibility that it could be a contributor but 6 months later, nothing has changed. I was scheduled for an EMG at the end of June, but that got sidetracked because I ended up having brain surgery at the end of june for a completely unrelated issue.
Now, I cant get in for an EMG until October 15th!!!! I am just completely frustrated and at teh end of my rope.
In addition to that, I had a GYN appointment last week and she wants to do a CT scan which i have no problem with (Ive had more than a dozen of these) but if she cant pin point exactly what is wrong, she wants to do an exploratory laprotomy because I am in constant pain and nothing is helping. We know I have PCOS but the BC pills have stopped working. I have multiple cysts that are not going away and we think that is causing the pain and they might need to be removed
I am also having serious stomach problems that no one can pinpoint. And my asthma has gone downhill since my surgery in june so I have to have a bunch of tests again to check my oxygen levels and heart rate when exercising.
I already have multiple diagnosis of Asthma, heart arrythmia, eczema, low IgA, multiple food and chemical allergies and I had a pineal mass removed form my brain in june.
And on top of all of this....I leave for school in less than 4 weeks!!!!!
I admit. I do ask "why me?" a lot. I know that there are a lot of people who are so much worse off than me. But there are days when everything is acting up at teh same time (pain from recovery, abdominal pain, asthma difficulties) that I just sit and cry. I've been living in and out of hospitals and doctors offices for the last 5 years since I was 16. I'm just fed up and frustrated wondering if this is ever going to end. I absolutely love all of my doctors. They are amazing people who actually listen to me adn dont blow me off. But I just can't take another appointment that ends with them saying "we know that something is wrong, we just dont know what" I'm sick of the testing and I'm sick of getting no answers.
And people ask us why we are spending so much money to go to Disneyworld when Disneyland is only an hour away. This is why. We need a VACATION. A real, week long vacation away from our life here. I really do think that vacations are sometimes necessary. I think my entire family is at the point that we need it for our sanity.
Right now I love the saying:
"In the entire span of your life, whatever immediate problems you're facing, it's just a blip on the radar unless you do something that turns it into a defining moment"
I know that I will get thorugh all of this at some point. I know that this is not going to go on forever. But sometimes, it feels like there is no light at the end of the tunnel.
I'm sorry you're struggling. I know what you mean, though. Sometimes it's no one big thing you can point to and say, "This stinks." Instead, it's many things that just chip away at you bit by bit. But you're right. One day you WILL look back at this. Hang in there!
You are so young. This shouldn't be happening to you. To me, knowing what you're dealing with, even if it's bad news, is much better than not knowing at all. I pray that you will have to strength to get through your days and that your doctors can finally come to some consensus about your health. 
