Advice Please!!!

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

I am a 20 year old, healthy (pretty much) female. For the past year and a half I have been having recurring intermittent low-grade fevers. They go to 100.5 for a week or so and then back down to normal for a week or too. I have also had periods of enlarged lymph nodes, only on the left side of the back of my head, for just as long. They are never sore, and they usually go down after a month. They arent accompanied by any cough or sore throat. I also have periods of fatigue. I have had blood tests galore, and the doctors have never given me an explanation for the fevers. I hadn't gone into the doctor for the fatigue and lymph swelling because I figured it was residual effects from mono which I had 5 years ago.
For five months now, I have had really itchy skin on my legs with no rash or redness. It usually gets worse at night. Five weeks ago the lumps popped back up on my neck, but I decided to go to a doctor this time because there were more than usual, three in total. Not very big, but hard and I know they werent there before. The fatigue has come along with the lymph nodes, this time its knocking me out during the day. I had bloowork done and the only thing that showed was that my RBC count is a little low, but no iron deficiency. The doctor mentioned lymphoma which I found out later, I had a second cousin who died of Hodgkin's. They did a chest x-ray which was normal. I was referred to a specialist who had no clue as to what it could be, and he didnt mention lymphoma at all. He said that it could be some kind of cancer, but probably not. Then he asked me if I was depressed, which I am not (just tired of having fevers). They ended up taking 12 things of blood and said call about the results in three weeks.
Okay finally to my question! Could this be lymphoma even though the lymph nodes fluctuate from swelling to normal? Can you have lymphoma and just have the systemic symptoms without the huge lymph nodes? He said that mine arent big enough to warrent a biopsy. He seemed pretty clueless about it all. Also, he looked through my chart and saw that my RBC count has been steadily decreasing for a year. What is going on???
I would like to know what your symptoms were. Do I have any cause for concern?

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

In case it matters, they tested for HIV, syphyllis, and mono, all of which were negative. I assumed they would be, but I guess its good to know I dont have aids. Wink

Orange Agent · Posted: Fri Apr 14, 2006 8:12 am Post subject: Re: Advice Please!!!

Hi Ceaves,

I'm a patient, not a doctor, so take my words with a grain of salt.

It sounds to me that whatever you have, Lymphoma can not at this point be ruled out. If it were me, I'd contact an Oncologist and get his opinion. Also a CT-Scan might give some hint of what is going on.

My symptoms initially were an itching on my neck, which later resulted into a swelling and a tumor, a severe loss of energy, some fever, and a great deal of fear.

Actually my prognosis, as scary as it was, was a huge relief over the unknown.

Good Luck and keep us informed.

Burt
_________________
Burt

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

Thanks for replying Burt. If I dont get any answers with the blood tests, I will consider asking to see an oncologist. I have military healthcare, and they pretty much make you feel like an idiot every time you go. Just last night another lump popped up on the middle of my neck. Its like its creeping across my neck from the left side to the right side.

Anyone else have a similar experience. I would really like some feedback, I keep going over all this in my head and it can get scary.

Thanks guys!

-Chelsea

Orange Agent · Posted: Sat Apr 15, 2006 7:42 am Post subject: Re: Advice Please!!!

It's me again Chelsea. It was good to hear from you.

Like you I have military health care (tri-care for life) but also not have medicare. All of my treatment has been from civilian facilities. When I was first diagnosed the closest VA said it would be at least 60 days before they could see me (no doubt in my mind that I would be dead by then) so all of my treatment has been from the local hospital via a team from Asheville which comes over once a week. I should mention that I also am covered by medicare now also and thus far (except for co-pay drugs) have had no out of pocket expenses (My lymphoma has been determined to be 100 % service connected and 100% combat related.

FYI, my blood tests have never shown signs of lymphoma, though they do provide valuable other information, particularly during chemo treatment.

If you have any military type questions feel free to contact me directly at my email address of brmann@verizon.net

I send Luck, strength and love,

Burt
_________________
Burt

vanessa · Regular Joined: 07 May 2006 Posts: 21

Hi Chelsea, i am no expert im just a new paitient but maybe this might help. i was recently diagnosed with lymphoma and for a year no one knew what was going on and i actually gave up until i started getting really bad pains in my chest again and i went through many doctors and specialists. ive had many many blood tests done and they wont show that you have lmpyoma.i have lumps that appear on my leg and then go away which i think is very strange i even went to show my friend once and they werent there, i thoughth i was going crazy so im with you there. they would also get itchy. side effects of lymphoma are fatigue, unexplained weight loss, some people get pains in their lymph nodes others do not, fevers, and night sweats. for a while i went through months of having fevers than i would be fine and then i would get fevers again. i think you do have a concern i know how it is not knowing and it can be hard to get people to understand and listen. i was very worried but the doctors couldnt help me until finally a month ago i got answers i hope it doesnt take you as long but i pray you do find out. i hope this might have been some help to you.
best of luck
vanessa

Life_101 · Regular Joined: 22 Apr 2006 Posts: 20 Location: N.E. Ohio

Hi Chelsea,
I hate to say it but many of your symptoms closely match the ones
I had before(after a year) finally being diagnosed with Hodgkin's. Fevers
that come one day and are gone the next, itchy skin, lumps in the neck,
etc. Thirty percent of people with Hodgkin's also had Mono antibodies in their blood tests.
I had Epstein Barr (mono) antibodies after testing me for everything from Aids to TB.
My "Specialist" said I had acid reflux and put me on Pepsid AC.

So as the others have said see an oncologist and get a CT scan. Knowing what is wrong,
even though it may be bad, is still better than not knowing. Good Luck and hoping for the best for you!

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

Life_101 and vanessa, thank you so much for replying. You guys dont know how good it feels to hear feedback. Life_101, how big were those lumps on your neck? Mine are a little bigger than peas, but then they will swell up, for no apparent reason to marble sized. When they do my neck gets really stiff, and I can hardly look to the left. They are also really hard, almost like cysts, but the doctors have told me that they are lymph nodes.
So I am scheduled to have a biopsy on June 13 with an ENT. The internist wanted to get me in there within 72 hours, but the ENT said that I am not a priority. I think that possibily having cancer should make me a priority, but hey Im not a doctor right? I havent had a fever for 2 1/2 weeks, so I feel pretty good. Still lumpy, itchy, and tired though.
Again, I really appreciate the feedback guys.

-Chelsea

Life_101 · Regular Joined: 22 Apr 2006 Posts: 20 Location: N.E. Ohio

Hi Chelsea,
Mine did pretty much the same thing, going from pea size to marble
size. And also fevers that came and went. When the nodes were large
my throat hurt when ever I swallowed. When the fevers became constant
and the night sweats wouldn't go away I went to my family doctor and
pretty much demanded he find out what was wrong or send me to some-
one who could. So I went into the hospital for six days.

My point being, you have to keep after them until you find out what
the problem is. You know that something is wrong and the sooner you
find the cause the better. Good luck and keep us posted.

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

That really freaks me out that your node did the same thing. Shocked

I guess up to this point I have been thinking that it couldnt be cancer because they fluctuate like that. At first my internist said that they were too small to biopsy, but after talking to the oncologist, he thinks we should. I called earlier today and left a message about wanting to see someone asap, and now I am waiting for him to call me back. I also called the patient advocate who said that I can only have the biopsy done at the naval hospital, unless I get permission from a doctor, and Im going to ask the internist about that when he calls back.
Alright, well I will let you know what I hear. -Chelsea

ceaves · Regular Joined: 12 Apr 2006 Posts: 36

Yup, still waiting for him to call back. Its weird, when the lumps go down a bit I start not to worry, but then they swell up and I freak out. I guess I should be more consistent. Oh and yesterday I woke up and my jaw was really sore. Right where the angel of you jaw bone is, under it in the fleshy part. I felt and there was a tiny lump. But it hurt, so thats good right? Today its not sore, but the tiny lump is still around. Its very small, and I dont think it classifies as swollen. Anyway, thats all for now.
-Chelsea

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