Not to scare you, but most of your symptoms do look like some type of Cancer.
I had most of those symptoms. They thought at first I had Sinusitis. Then I made
them look into it further and thats when they found the Cancer. I had Non Hodgkins Lymphoma. Diagnosed in 2005. Sometimes you have to push a Doctor to look further.
How? How do I keep pushing? I've been to Mayo, Northwestern, and before the fevers showed up, told to go to therapy, I've written to Amish healers and virtually bombarded by the Lyme people. I have had a bone scan, two surgeries in the past six months. I am exhausted. My blood work is NEVER the same. I have three little kids and a stressed out husband. I don't know where to push next.
FRIDAY: My infectious disease doc at Rush is really my main doc now, and he is going to have someone look at the gallium scan there, and he wants a retest of the cmp to make sure it is legit and not a lab error or error due to clotting.
I had an abnormal mamorgram at Mayo last year, so I called the gyno and went in for a check, she identified the enlarged underarm lymph nodes right away. So, I have a diagnostic mam and ultra sound on Monday, I will also retake the cmp blood test on Monday.
Now I have two confirmed findings of enlarged lymph nodes under my arms in addition to the cervical ones, so Dr. T at Rush said, "It looks like we're going to have to get those nodes biopsied," so once he get's the mam results, the actual cd of the gallium scan to review, and the blood cmp back, we'll schedule the surgery for the following week. It is weird when you feel like you have scored, in a situation like this.
MONDAY-So, mammogram was clear, but I'm too thin for for them to fully include axillary lymph nodes in image, so they would not perform ultrasound, need a separate order - medical red tape
new CMP returned with normal liver enzymes, but high glucose, low chloride Bun and Sodium, so we'll see. Dr. T is having someone at rush review my gallium scan and then assuming these nodes haven't magically disappeared, he'll decide on a biopsy proceedure
So, mammogram was clear, but I'm too thin for for them to fully include axillary lymph nodes in image, so they would not perform ultrasound, need a separate order - medical red tape
new CMP returned with normal liver enzymes, but high glucose, low chloride Bun and Sodium, so we'll see. Dr. T is having someone at rush review my gallium scan and then assuming these nodes haven't magically disappeared, he'll decide on a biopsy proceedure.
I am so frustrated! Where is the answer? Thanks again for your ideas and concern.
“We must accept finite disappointment, but never lose infinite hope.”
Martin Luther King Jr.
"Just keep swimming, swimming, swimming....... " Dori, Finding Nemo
You keep fighting. If you are given answers you do not like, tell the doctor to look into further. Doctors are suppose to help the sick, not just throw out improper diagnosis,
You have to be strong and never give up. You must get the proper answers you want.
Not some long words that mean nothing. I will say a prayer for you, and light a candle
in your name. Stay tough and never give up.
I just wanted to say I'm praying for you, too. I'm going through a similar issue with axillary nodes (finally scheduling the biopsy next week). It's so frustrating dealing with the red tape with everything... It could (and should) be so much easier.
Definitely keep pushing for the answers.
First, I want to thank you beau, I was very touched by your candle and prayer
And I agree ecrit it should be so much easier, please let me know how the biopsy come out.
Well, here I am, still with no diagnosis.
I have had fever every day for seven months and since December it is
over 100 every day, I continue to lose weight - I am 107 pounds, night
sweats, i feel awful. I've had one enlarged cervical node, but small,
well now it is a little larger, and there is another one on the other
side. OH and now there are more pronounced nodes under arms, one
deemed "suspicious" by surgeon. STILL, they are debating on if they
should proceed with a biopsy!
Last year. Way before fever-ville. Before my
symptoms became so clinically obvious, i had been told by the best
doctors in the midwest to get into therapy.
I have been fighting, arguing, pushing, with the doctors from top
hospitals, When the the hemo oncologist found new lymph nodes under
arm but still sent me home, I sat down and cried a little and then
said "O.k. what now. So, I called my gyno, saw her the next day, she
confirmed and orderd the mamm, had that the next day. as I mentioned
and then surgeon felt them as well, I think the problem is that they
are not "impressive" not golf ball sized. They are just over 1cm and I
think a couple under the arm are a bit bigger than that. Plus- the
gallium scan has been reported as normal even though there is mild
uptake show under arms. I've had it reviewed by two diff. hospitals,
so I guess it is normal-though I still think they are wrong, I mean
you can see it!
Ugh, I am so itchy right now, I have a rash all over my stomach and
chest and my temp is 101.8. I am about 2 seconds from walking
screaming into the ER , except then they would put me in the psych ward.
So, if they come back on Tuesday after their little summit meeting
without an order for a biopsy-then what
How can this be?
-my blood work is not telling them anything. Infectious
-Disease thinks it
is a drug fever, even though it doesn't explain the rest of my
-Hemotology thinks it is rheumatolgical, though ID says no
because ANA is neg. sed rate normal,
-Gyno sent me right away for a diagnostic mammorgram that came out o.k., but called to make sure I followed up with a surgeon regarding the under arm bumps, I did.
-He is going to call all of my doctors, because I have had such a huge
work up, how could they be missing this when something is obviously
-All other doctors think it is not a drug fever, except the ID
guy at Rush.
-My legs are covered with a purple mottled vascular
insufficiency and a rash. He said maybe I should go back to Mayo, now
that I have the FUO - CAN I FORCE THEM TO BIOPSY THIS AND DO A BONE
I TRULY BELIEVE THAT I AM GOING TO DYE IF THEY DO NOT FIGURE THIS OUT
SOON- The surgeon hasn't ruled out a biopsy he is just perplexed.
Everyone agrees that this all seems to point to lymphoma, but they are
"just not sure."
May I ask about your symptoms, the size of your lymph node? Blood work? Ecritmaman?
Sorry, had to vent-I just don't know what to do.
My lymph node is huge... 3.9 x 2.9 x 2 cm. The only 'odd' thing on any of my bloodwork is a high white blood count (with no infection) and a 'left shift' (have no clue if that's related, but they were interested in it). I have a low grade fever, roughly 99, that hangs around - been 3+ months now. I had an appendectomy 10.29, they found hyperplasia but no reason for the pain - the pain is now back (there's a group of nodes in the lower right abdomen that may be the issue). I have also started having chest pain (ekg was abnormal - I have arrhythmia and mitral valve prolapse - but nothing to cause pain). I have fatigue (they also tested me for lupus since I was SO tired and the ANA and RA factor came back neg). Funny - the past week my face is BRIGHT red, and I have no idea if it's related or not... The frustrating part (both for me and my dr) is that all these *could* be related... OR they may be seperate issues. The node was the major red flag for us... We were testing for all kinds of stuff (for all the symptoms I was having before the lump), and all of a sudden I realized that 'bone' was not in fact a bone, but a lump (not that smart of me, I know). It's been there for months...
They also found 2 smaller 'nodules' (also lymph nodes) in each armpit (for a total of 5 enlarged lymph nodes) - they're only 2+ x 1+ x 1+ cm.
My MRI was Thurs, I get my surgery date on Tues (hopefully it's soon).
I would go back to the surgeon and just ask for a biopsy. Tell him that the lumps are causing you a lot of stress, and that just having that answer would relieve a lot of your issues. I think he would be sympathetic with your situation.
You needing therapy should not be an excuse to not find the answer. In fact, they are causing mental distress by not helping you!
I really hope that you find a doctor who will help. I really think I would try the surgeon... It's the best way to rule out the more serious issues.
Sending hugs and prayers your way--
thanks for the hugs and prayers - right back at you
Funny I have an aortic regurg and mitro valve pro too. mild
Also- I have facial flushing
have your doctors looked at carcinoid?
No - I'd never heard of it (just looked at it).
My Dr. has me on oral steroids (medrol) for possible Parvovirus (haha - NIIICE). If the rash doesn't go away in a week, we're going to be 'more aggressive' (ugh, fingers crossed). It just started, and it's on my head, arms and trunk (not so much on my legs).
My 'tumor' (as described on the MRI) is actually 'of neural origin most likely' - it is IN my medial nerve of my arm. So, surgery must be done by a neurosurgeon, and may include grafting of a nerve from my leg (!!!!). Of course, this type of tumor, even when malignant (assuming it's a neurofibroma, which can transform apparently) - doesn't metatastize - so even if it's 'bad' - it's local. Waiting for the neurosurgeon scheduling - for an appt and surgery.
Are you going to meet with the gen surgeon again? Let me know how it goes... I hate when I feel like nobody is listening. Ugh.
Wow, I just had open incision surgery on my knee to remove a huge tumor-synovial ganglion cyst-benign this past halloween- done by the director of ortho oncology at Rush.
I actually cried when they said it was benign. How crazy is that. I just want to end this search and start ending this illness.
Carcinoid is a rare endocrine tumor, usually in your gastro instestinal area, very very hard to diagnose, but one of the halmark symptoms of carcinoid syndrome is facial flushing- need a urine 5HIAA and blood CgA test to start.
Well, he did call back today, said he had talked to my other doctors
and they all collectively felt that there was not sufficient reason to
biopsy the lymph nodes, because of their size. They want to review my
medications, and send me to a rheumatoogist and if those two roads
dead end they will consider a bone marrow. I argued the point as much
as I could, the surgeon agreed to contact the ENT person who did my
first inconclusive needle biopsy back in march to see if she thought
about pursuing a biopsy of the cervical node "to put my mind at ease."
So there we are.
Ugh. I'm sorry. I know how frustrating this all is - it's awful knowing there's something they're missing - especially when all they have to do to rule it out is just do a test!
I'm glad they're going to consider the bone marrow if the rheum and meds don't pan out. At least they're not saying 'no' (which is the absolute worst - I swear right now I feel like everyone's playing hot potato with me!).
Maybe they'll find something at the rheumatologist. Systemic lupus causes huge issues, so maybe you'll get an answer.
Keep me posted - I'm pulling for you to finally get your answers (and me to get mine!).
well, Rose, you need to TELL your dr to LOOK at your symptoms, and TELL him that you want to be checked for lymphoma, because you have very questionable symptoms. If he wont do it, then change drs, and keep on until they listen. My best friend had a pea sized nodule on her neck, and 4 weeks later it was the size of a tangerine, she went for a ct scan of her neck, and it showed her lymph nodes were all lighting up on the scan, so the dr did a biopsy, and she has Follicular NHL....her symptoms were like yours, so I advise you to tell your dr you want a ct scan of your lymph nodes, and take it from there...good luck, and god bless
Thanks for your support "D" - I am trying.
Turns out my primary did think I should have a biopsy and low and behold the surgeon called the ENT and they said they would definitely take it out, "if for nothing else than to make me feel better." Now, I am just trying to make sure they biopsy both the cervical neck and the under arm and possibly groin. I see the ENT today. My lower back pain particularly on the right side, extending through my hip and down my thigh is at a whole new level and my toes are purple and the first four (all but my big toe) on the right side has no pulse or measurable oxygen level, arterial doppler was fine, so probably some kind of reynaud's phenomenon.
Katie - did you get your biopsy?
oh Gosh, I feel so sorry for you, can not believe that they treat You so bad, doctors are supposed to help for You, because there is something seriously wrong with You girl! I hope You will get an answers soon...
Nope. Because it's a neural tumor, and it's on my brachial plexus, I'm having a heck of a time trying to find a doc to remove it.
I saw one of the best dr's in Nashville (neurosurgery), and he is calling across the country (great, sounds cheap, right?) to get this sucker out of there.
I am SO glad you are getting your biopsy.
Hopefully it will get done quickly...
WHAT IS A NERUAL TUMOR? Well, the ENT won't do the biopsy, because she feels there isn't enough of a chance that it will yeild answers b/c of it's size and that violates her hipocratic oath. If I die from a curable cancer, do you think that will violate her oath?
She offered a CT of the neck and if something showed up she would go ahead and biopsy it. The nodes she feels, she thinks are because I am so underweight. HELLO---- I said I'd call her.
I see a surgeon that does a lot of breast health stuff on Tuesday, to evaluate the underarm nodes. So, we'll see. I see a rheumatologist (sp) on Feb 13 and if he says no it's not rheum related, I think I can get the hemo onc to do a bone marrow. I also have calls into the carcinoid onc. I was in contact with before - I've been writing things down on this whole experience. I've tossed around a few titles, but right now I'm calling it "Slowly dieing in the Suburbs"
They suspect it's neurofibromatosis or schwannoma. Yeah, EXACTLY what I thought!!!
They're going to call, but the docs I've talked to have said I will likely end up at the Cleveland Clinic or the Mayo Clinic (or one of their sattelites). I thought getting it out would be the EASY part!!! They are trying to help me, and are working on my referral. The neurosurgeon was REALLY nice (yes, there's actually doctors that are nice and knowledgeable - I promise!) and so helpful. His quote was 'I will get the person I would want operating on my brachial plexus to do your surgery' - what more can I ask for?
Their argument is so silly... Not only that, but being underweight doesn't swell your lymph nodes! It just seems rediculous they're pushing and pulling you around, when they could just TAKE IT OUT and figure out what it really is. I mean, you would be satisfied, they would be satisfied... Come on!
I like the 'Slowly dying in the suburbs'... When chart numbers disappear, how it feels on the other side of the stethoscope, when common sense meets medicine, it's my life but your call... Yeah, you could go anywhere with your story...
How about "The Cold Side of the Stethoscope" I also like the It's my Life but your Call
I have been to Mayo - a year ago-before my fevers started - and they ended up giving me a script for therapy. Even though that is where my first carcinoid test came back positive. I insisted on another/diff one my way out the door, and when it came back positive two days after I was home, the internist invited me back to Mayo to rule out carcinoid. "Sorry, but I already spent my thousands of dollars going to MN." Anyway, retesting came back normal here- so I didn't get anywhere anyway. It is an amazing place, though. I am actually going to schedule another visit for a month from now, in case I am still in limbo-I think now that I have more defined measurable symptoms, they will be able to help.
That's a really good one!
Surely they can help more - you've had more tests done, and like you said, you have measurable symptoms. Sad that you have to have a backup plan to the current situation, but good that you're looking ahead.
Since I'm going to be traveling somewhere to get this thing removed... How does that work? Do you have to pay for your own lodging, etc? Or is there someplace that patients can stay? I'm guessing insurance doesn't cover travel... Even though there's no one else that will do the surgery, I'm probably just out of luck...