It's not cancer!!

[knvv]

It's not cancer ... yaay! I just got results back yesterday. I have an appointment with my regular doctor to see what the next step is on Monday to figure everything out. But the thing that bothers me now .. is the fact that one or more of the lymph nodes on the left side of my neck is quite swollen now. It seems to be getting bigger and bigger. And it's to the point where it's kinda hard to swallow. Best way to describe it is  you know how you get a really bad sore throat and it's kinda hard to swallow? It's like that ... Just hope it doesn't keep getting bigger and bigger over the weekend before I go see him. I really don't wanna go into the hospital AGAIN ..

[knvv]

Yeah, it is isn't it? Truthfully ... he isn't a new doctor. :) I've been going to him for a few months now for my anemia and been getting iron infusions from them. I go again monday for another. So.. I already knew what he was like and it's nice to already be established with him :) And yeah I'm keeping him, my endocrinologist and my pcp. I like them all. They're awesome :) I just really really hope we can get that PET scan cuz it'll rule out a couple of things for certain.

How are things going with you? Any more news?

[Braintoobig]

Crazy! They tossed around the sarcoidosis thing with you too!
I like the sound of your new doctor so far! Keep me updated!

[knvv]

When I say tell him about anxiety, etc .. or them I mean the patients telling the Docs and nurses LOL i didn't realize I said that weird

[knvv]

Okay so the visit with my hematologist went very very well. I did want to see him a while before this but at least I finally saw him.

First of all, I'm glad he agrees with me that the last time I was in the ER a few weeks ago that it wasn't anxiety or a panic attack. He said that people who are panicking will tell them. He has never heard of a case where they don't tell him and I wasn't panicking at all then. I just felt like crap.

Second .. He still believes it isn't but when I gave him the looong list of symptoms I have been feeling (esp. the exhaustion and extreme weight loss), he told me he wants to do a PET scan to make sure that it isn't lymphoma .. to make sure there's nothing there that looks out of the ordinary that might need to be looked at, another biopsy. He didn't really find anything alarming when he felt around at my lymph nodes.Nothing hard, or too large which is definitely good news.  While we do this he wants to see if I do have Sarcoidosis. He  said if it is, it'll light up in the PET Scan he just might have to fight the insurance companies to get it LOL but he said he's going to put up a good one otherwise in 3 months he'll do another CT scan. Keep an eye on things. I'm glad he's double checking just to be sure.

Oh, he also wants me to see an ENT for the dizziness I've been getting, esp. since I get nausea along with it. He says if you've been feeling dizzy for over 2 weeks, then it's too long and mine's going on 2 months LOL So when I see my doc next week I'll let him know.

That's about it ..

One more thing, looks like we can rule out TB cuz he said the test looked really good and I gotta go in a few hours to get it read by my PCP.

Hmm...

nothing more here . That's about it

[knvv]

It most definitely is. LOL

And man, what a wait but at least you're going to a really good place to do that so you know you'll be in excellent hands.

I'm getting ready to go to my hematologist here in just a couple minutes and I got a looong list of symptoms for him LOL. I guess after talking with my doc and him, I'll finally (hopefully) know the next step unless he's baffled by everything too LOL

Any ways .. so far no reaction from the TB shot so yay! I'm soo glad it's not.

[Braintoobig]

Optimism is really hard to come by when you're running all over the place and being left empty handed. I hope that you keep feeling better!

My surgery is going to depend on my appointment with John's Hopkins on May 9th. I'm going to see what he says and then make a decision. I'm guessing it will be some time mid to late June. We shall see!

[knvv]

I forget what it's called .. PCD pr PDP or I dunno something like that. I should look it up so I know exactly but I haven't been feeling good today. And if a reaction shows up within 3 days, Ya got TB if not, then you're fine. So far no reaction so yay! Normally you can tell within the first 24 hours.

Tomorrow I'm going to my hematologist/oncologist and see what he has to say .. what he wants to do with the next step since it isn't cancer.

Yeah, I think you'll be okay too :) I'll keep you in my thoughts for sure. Do you know when they want you to have your surgery?

I'm also trying to be optimistic but days like today it's kinda difficult to be.

[Braintoobig]

What kind of shot did they give you?

A neuroendocrine tumor is a tumor that arises from neuroendocrine cells that get uncontrolled growth. Neuroendocrine cells are responsible for secreting hormones and they are present all over the body. My tumor just happened to pop up on my pancreas. These tumors can also secret hormones or they can be non-functional. They can spread through the body too. Apparently it's a pretty rare cancer to have. I'll get the thing removed and I'll be fine! I am optimistic.

I'd really like to hear what your doctors say! It's always a mystery when lymph nodes go crazy.

[knvv]

Yeah, I know exactly what you mean. Just tired of being sick and at the moment don't care what it is only if it can be treated and/or cured.

Well hopefully the doc will call you back really soon for your appointment and I'm sorry they want to do all that surgery for you :( That really *****. Though I hope that will help with your tumor you have. What is neuroendocrine tumar any ways? I've never heard of it before.

Any ways ... my appointment was confusing at first. My doc seemed to be baffled by me, too so he spent time on the phone and stuff with my hematologist and wants me to go back to my endocrinologist for my autoimmune hypoparathyroid and hypocalcemia to make sure my calcium levels are okay and continue to rise and not fall. Don't need to end up in the er again. Ugh ...

But he is throwing around a few things this time. Endomitriosis of course, and autoimmune. But this time he also included possible TB and Sarcoidisis. Since TB does run in the family, we're testing that for me so in 2 days I have to go back to see if there's a reaction from the shot they gave me. So far pretty good though. :) I hope it stays that way.

[Braintoobig]

I totally understand how that feels. It's like you feel like crap for a long time and you just want an answer so you can start getting treated. Sometimes I get mad at normal results. It's not like I WANT something wrong with me. It's just when you feel so horrible and don't know why it's very stressful and frustrating.

I had a mono test done a month after my symptoms started and it was negative. It just showed a past infection but not a present infection. I was told to "wait it out" and if I didn't improve after 6 months then I'd have to see an infectious disease specialist. Apparently mono can become chronic and cause severe illness and even lymphoma. UGH. Well here I am 7 months later still the same! I tried to make an appointment today for the infectious disease doctor but had to leave a message.

Long story short, I also have a neuroendocrine tumor on my pancreas that has to be removed soon and they want to remove my spleen along with half my pancreas. I'm worried that if I'm fighting off some weird infection and they want to remove all that stuff I might get even more sick.

Grr it just never ends!!!

[knvv]

Yeah I sure do. You can believe that after feeling like this for the last almost 2 years and things just keep going worse? I swear .. I am glad that the lymphoma results are  negative but at the same time I kinda wish it was cuz that way we could finally deal with it. LOL .. You can understand I'm sure :D  

I'm also glad that the doctor I have now finally believes there's something wrong with me when I know before he thought I was a hypochondriac. LOL. It definately helps ..

I hope they figure something out soon for you also .. I dunno right now anything to suggest for them to check but ..  It sounds like you're on the way. If it's Mono .. at least you know it's not "dangerous" .. just gotta let it run it course.  So that would be good news there. even though it is sucky to feel like this.

When's your next appointment? Mine is tomorrow at 1:45 and I'm not sure what to ask or anything. I'm kinda lost and I hope he's not :D Though I really hope I don't have to go to another specialist .. watch I'll probably have to. Ugh ....  

All I can say is thank god for insurance :D :D :D

[Braintoobig]

I have endometriosis too and I considered that thought of having endo in my lymph nodes but who knows..
I have considered seeing an infectious disease for it because this has been going on for 7 months now. I was tested for lyme's which was negative. My epstein-barr virus came back just showing a history of the illness but not an active infection. The doctors have tossed around the idea of sarcoidosis or chronic mononucleosis.
At this point, I really don't care! I just want it to go away! I'm sure you do too!

[knvv]

I'll do that. If I remember :D :D (bad memory) Heh ..

I do know it can be the cause of alot of things and I was at first thinking endomitriosis (which can travel) but as far as the throat ?? Eh .. I'm not sure. I'm thinking it's more of an auto immune thing, I do have 2 auto immunde "diseases" and who knows .. Maybe I got more. LOL Just my luck, eh?  I hope it is something simple like that.