I am really afraid that I may have lymphoma, and that the diagnosis may have been missed a long time ago.
about 2 years ago, i had a CT scan in the ER and the doctor said that i had "some scattered lymph nodes, a thickened appendix, and a thickened umbilicus". He said it meant nothing. I asked my doctor about it a few days later, and he said that the report he got didnt say anything about lymph nodes...I dont know if that means that the ER Dr. overread the scan, or if the radiologist shrugged off something that should have been noted.
More recently, I keep getting sick (mostly colds, sore throats, bronchitis, and twice in the last 2 months i had pneumonia), My left arm has been swollen for about 8 months (had a doppler and it is not a vascular issue), I have a very very small enlarged node on the left side of my neck that i just found today, Ive been getting these unbelievably painful sharp stabbing almost shock-like pains in both my armpits (comes and goes. only happens once in a while, though), the soles of my feet and the palms of my hands get a painful itching feeling deep under the skin every time i come into contact with water for more than about 2 minutes (aquagenic pruritas), Ive been having night sweats on and off for a few months, I've lost 10lbs this past week, and Ive been super exhausted lately. Although admittedly, that could just be from stressing over all the symptoms Ive been having...The good news is that, other than the little one in my neck, i dont seem to have any other palpable enlarged lymph nodes anywhere.
Am I right to be fearful that an early lymphoma diagnosis may have been missed a couple of years ago? Or does this all seem more like a random assortment of symptoms that probably have nothing to do with cancer?
I had some bloodwork done yesterday. I guess Ill know more after it comes back. In what ways does lymphoma affect bloodwork? What does it change? (the Dr - not specifically looking for lymphoma - ran a CBC, liver function, kidney function, glucose, and ANA)
Sorry everyone, I know this was long and rambly. I'd really appreciate any insight anyone has. thanks!
...oh I forgot to add above, that in the emergency room a couple of years ago, my bloodwork came back with elevated white cells and low red cells. Dont know if that's at all relevent, but there it is...
Hi, did your doc mention Polycythemia Vera (because of the aquagenic pruritis)? But the doppler would seem to rule out clotting from too many platelets.
Did you ask to receive a copy of your blood tests (especially the CBC) so that you don't have to wait for a doc to give you the results?
With polycythemia vera, you'd expect high counts. With lymphoma, generally there wouldn't be any change until the bad cancer cells crowd out the good cells in the marrow where blood cells are produced - so counts would be lower.
But be aware that enlarged lymph nodes are generally far more likely to be due to infection than to cancer.
Thank you for your response.
I actually have polycythemia vera in the family (although I dont know if its hereditery). I think that was the reason he decided to do the CBC. . .At least, he said he was going to do it right when I mentioned the aquagenic pruritas. As for the lymph nodes, I have been sick a lot lately, so maybe there is still some lingering infection that i dont know about. When I woke up this morning, I just noticed a big lump just above my elbow, on the inside of my arm, that definately was not there yesterday.If that's a node swelling, maybe it will help the doc figure out what's going on.
Cancer is a word that would scare most anyone. First, I'm not a doctor but I have seen friends and family members suffer from leukemia/lymphoma. It's pretty unlikely for a cancer as common as lymphoma to go undiagnosed for years. Your weight loss could easily be attributed to stress. Like Ken said, most of the time enlarged lymph nodes are because the body is trying to fight an infection. Same with WBC counts. If it's slightly elevated that's most likely means an infection. Have you thought about looking into auto-immune stuff such as Chronic Fatigue Syndrome or Fibromyalgia. Those two things can cause swollen lymph nodes, body pain ect. That may be an area you want to look into. Best wishes and health!
I think the doctor is looking into autoimmune. He ran an ANA will all the other bloodwork. I am (hopefully) getting the results back today, so I guess Ill know more later on. I thought the tests would be back on friday, but when I called, they hadnt gotten them, so Ive been a mess all weekend. Something in the back of my mind is still telling me that Im fine, and stress is just making my body freak out...but so many symptoms...logically, I just cant imagine that nothing is wrong with me...I also noticed this afternoon a bunch of pea-sized, kind of hard rubbery lumps (i guess they'd be called nodules) under the skin on my right forearm. They're scattered all over between my elbow and my wrist. (I actually posted about just this in the undiagnosed forum). They're not visible at all - the skin looks totally normal, but with very light pressure, i can can easily feel them. I had just one that was causing a wierd sensation that led me to fell the spot and find it, and then a few hours later I was up to 15 of them! I havent counted again since then. I dont want to be any more freaked out than I already am. Im gonna mention it to the Dr when I hear from him about the bloodwork. Hopefully he'll know what it is. Maybe its some reaction of some sort to whatever the large swelling is higher up on the arm. (sigh) I cant even tell anymore if Im falling apart, or just losing my mind. Hopefully there will be some magical (and NON life-threatening) answer in the blood.
That latest sounds like it might fit under the heading of "shotty lymph nodes". I'm presuming they do not move all together as a bunch.
JDS2805 mentioned CFS and FM. I also often think of CFS when people show up with prolonged and unexplained enlargement of nodes. But the kicker in your case was the aquagenic pruritis. I've never heard of that with CFS, but you never know. You might try some topical antihistamine to see if that changes anything. Also, does exercise make you worse at all?
On the other forum, you said, " Just for the sake of simplicity though, Im going to assume this nodule thing is unrelated." Actually, the reverse is true - also known as the 'law of parsimony'.
I hope you get some good news today. If you post your test results please also post the ranges.
whew, I think that does it. So the globulin was slightly low, the heboglobin is slightly high, and everything else is within range, but lots of stuff is right on one edge or the other of the normal range. Not sure if that matters, though. . . except for the WBC and the neutrophils being at the high end of normal. Im gonna have the doc recheck that in a couple of weeks to make sure it comes down. Now my biggest problem is - What the hell is going on?! Im going to go back to the doctor in the morning to ask about the lumps under my skin (which are now scattered all over the insides of both arms, both thighs, and both breasts). I did notice that the little lumps seem to all be directly over a vein. I dont know if that means it is the superficial veins bulging, or if its just a coincidence that they all seem to be laying like that... I feel like my body is fighting me. I cant seem to get a handle on what this is, and in the meantime, whatever it is keeps getting worse...sorry for rambling. Thanks!
Hi, glad to be of help, Jaye - and of course you are not rambling at all. The more info, the better.
You have lots of clues but I don't know what they mean altogether - though it's usually reasonable to assume that everything has the same cause. So just some thoughts:
the original thickened umbilicus might be the source of everything. Why were you in the ER, because of pain?
with your liver numbers low, do you feel any pain when you press on your liver? any jaundice present in skin or eyes? the numbers are low-normal and ordinarily wouldn't be much cause for concern *except* that you also have all those unusual symptoms
any pain anywhere? no fever?
the bumps over the veins might be the valves, which are now visible because the veins are inflamed. Are the new ones of the same type as the nodules that you described before?
neutrophils high generally indicates bacteria or fungus (lymphocytes high generally means a virus) - but there are always exceptions
I'm surprised that BUN and creatinine are low instead of high, because you lost 10 lbs in a week and I'd expect that to be mostly water - which makes for dehydration and makes those numbers high.
under the arms there are large nodes with lots of immune cells and they probably are excreting lots of chemicals which cause the feelings there. I assume you checked for bumps there (also groin) and found none
hmmmm... if there is an inflammation in the veins which causes the one-way valves to malfunction, maybe that caused the arm swelling. Just a wild guess there.
is there anything unusual in your environment since the swelling began? any toxins or pets or medications? any food change? any family history that gives any clue, such as autoimmunity or weak immunity?
any tick bites (Lyme)?
a negative ANA doesn't rule out all autoimmunity
just as a pure guess at this point, I'd think of an infection in the venous system, that's taken hold because of weakened immunity
I hope you post back when you learn more or get any change in symptoms.
So, I ended up in the ER today cause my heart was racing and doing backflips. But it had calmed down by the time the abulance came (20 minutes - nice, right? good thing it wasnt a heart attack!), so when they said they wanted to keep me in the hospital overnight, i said no way and signed out AMA. But, from there, I went to a doctor at a walk-in clinic to get a name of a new cardio., and when I told her about the lumps on the veins (which are all the same nodules i had originally mentioned - just more of them), she also said that its probably the valves. Now, That doesnt explain why the veins seem to be so inflammed. She didnt even look at them, so im left to guess as well, and I would tend to agree with you - that this is something in my vessels. I can see veins that i havent been able to see in years (since i was really skinny), and they are very sore in some spots on the lumps....Im going to try to go see a vascular surgeon. That's probably the only doctor Im gonna find who will take a vascular thing seriously at this point. I hope they do. I want this resolved already!! Im getting a lot of pain in my hands now. they're tingly all the time, and the fingertips hurt sooo badly. feels like someone is sticking a needle into them. Not "pins-and-needles", but its the feeling of someone taking one needle, and pushing it into the pad of you finger tip. Wierd feeling. Painful feeling. Goes away on its own, and starts back randomly.
Out of curiosity, why do think the thickened umbilicus may have been significant? I couldnt find any info at the time as to what it could mean. Do you know what can cause that?
The low liver levels might not be a symptom. Im on painkillers everyday (for about 4 or 5 years now) for a spinal issue and almost constant costochondritis, so my liver might be starting to suffer a bit. I may have to come off the pills for a while. Im going to check with my pain manegement doc about that. maybe we'll rerun the liver tests.
As for fevers, I dont really run traditional fevers too often. My normal is 97.4, so for me to go over 100 - that's really high. When I had pneumonia, The highest my temp went was 100.3, and that was just for an afternoon. The rest of the time it stayed around 99.5 until i got better. I do often hover around 99 when nothing else specific seems to be wrong. I guess 99 is a kind of a fever for me. but when that happens, i usually just feel generally sick. No real symptoms, just run down and achy. But it ususally goes back to normal in a few days. That happens 2 or 3 (or, rarely, 4) times a month.
I have, thankfully, not found any nodes in my armpits or groin. I dont have tick bites - I dont even go outside. The only reason I ever leave the house is for medical things (why oh why cant they bring back house calls?), and my medical visits, until recently, were few and far between. I cant think of how i would have picked up a tick. Im downstate NY (central nassau county). Im sure we have some wooded areas with ticks here, but not really where i live. I dont think I cross any places likely to house ticks on my way to and from the doctor. Its really just into my car/drive to the office/walk across a parking lot - then reverse. No wooded areas. All concrete. Hmm, lets see...no new foods, no new toxins that I know of, no new pets...I was trying to think of an allergen that might do some damage, but I have hardly any allergies at all to speak of (Im not even allergic to dust and pollen and all that...just bee stings and mushrooms...my system is usually very tolerant), so I doubt its an allergy, allthough I suppose anything is possible.
My family doesnt have any hereditary immune issues that I know of. My mom has MS, but my understanding is that its not really hereditary. I also saw her neurologist once, cause I kept getting really shaky (i have a very exaggerated fight or flight response. My adrenaline surges very easily. I just wanted to make sure that was all it was) and she did a full neuro exam, and didnt see a need for further neuro testing, so I think Im good on the MS front. We have A TON of cancer (kidney, breast, leukemia, lymphoma, colon, uterine, thyroid, brain, skin...ummm...it think thats it), which i know can cause immunity issues, but Im hoping its not any of that.
Ive alo been getting stomach pain and more nausea the past couple of days, but, because ive been afraid of inflammation in my veins, Ive been taking A LOT of advil (4 pills every 4-5 hours - doctor sanctioned regime for a pinched nerve a long time ago). So between that and the stress, my stomach might just be taking a hit. Im laying off the advil tonight to see if it gets better.
Interstingly, I read about a type of vasulitis that is an autoimmune response to something in tabacco. Traditional treatments (steroids and stuff like that) dont help at all. The only cure is to stop smoking. I have been trying to quit anyway, but now I am desperately trying to quit quickly to see if that could be it. It causes syptoms most often in the arms, including numbness and pain (and eventually gangrene) in the hands and fingers. If that is whats going on with my arms, that would be great in a wierd way. It is cureable, and it would be the kick in the pants that i need to quit smoking forever. Im going to mention it to the vascular surgeon, if i do get to go see one.
So, for tonight, Im going to just try to relax. Give by mind a rest. My arrhythmias have settled down, but i dont want them acting up again. When Im overly-stressed, it's so hard to know what to label as "a symptom" and what to label as "stress related". Im trying my best to stay calm, but its really hard. I always have this horrible feeling that no one is going to figure this all out, until its too late to do anything about it. Hopefully Im wrong, and someone will pinpoint it and it will be treatable. It will be nice to feel normal again.
Thanks again, Ken!
About the thickened umbilicus, it's something I'd never heard of. I'd assume most docs wouldn't think much of that because it's probably rare. But it could have accounted for the enlarged nodes in the area. So I looked and found:
that it indeed can become the site of an infection.
If you have very active immune system, then possibly that could have started everything off.
my body temp has always been low. That's just my normal...My BP is good. it always seems to hover between 90/70 and 120/80, depending mostly on how stressed I am...Exercise doesnt seem to change too much in general, but i also havent been getting very much of it since i started getting sick....I dont drink at all. 7 years sober now...And yes, this all started with a bad cold that turned into pneumonia, and then all hell broke loose.
New symptom today. I cant seem to catch my breath. My chest just feels tight, or full. hard to explain the feeling, but i cant breath well, and Im not wheezing. the doctor said chest x ray and EKG were both fine, and sent me home with a script for xanax. . .I have panic attacks, and I know this is not one! I literally woke up unable to get a good breath. It started before i had a chance to get panicked about anything. I may have woken up as a result of the tightness...oh well. I started taking high doses (2gm/day) of ammoxicillin, just incase its an infection. I dont want it taking over my whole system while doctors get around to figuring it out. Im sure what Im taking isnt enough to kill a vascular/cardiac infection, but hopfully, it can stop it from getting worse - just incase that's the problem. I have an appt with a vascular doc on friday. Hopefully he can rule out anything serious - or at least treat it if it's serious.
The aim was to see how you would fit with Chronic Fatigue Syndrome and maybe Fibromylagia.
Body temp typically goes lower but you were always low so I don't know how that fits.
A BP of 90/70 would be considered on the low side. AFAIK most CFers have hypotension from too much Nitric Oxide - but some have hypertension.
Most CFers probably have exercise intolerance.
Starting with a 'bad cold' can result in Post Viral Syndrome, of which CFS is the most well known. That can be a chronic viral infection - or else leftover immune system hyperactivity... with chemical sensitivities and allergies.
The breathing might be from unstable mast cells in the lungs, degranulating their histamine.
But lots of docs just shrug off CFS.
Btw, if I were taking an antibiotic, I''d also be having yogurt. That might help with gut flora and it can't hurt.
I hope you find it something useful tomorrow, Jaye.
So, I didnt find out much today, but I do feel like I may be on the right track finally. The vascular surgeon told me to go to a rumatologist (im pretty sure i spelled that wrong. is ther supposed to be an "h" in there?) to see if its vasculitis - he said he cant diagnose that. Doesnt that sound strange?! Why would a vascular surgeon not be able to diagnose a vascular issue??...But at least he did tell me that i dont have any clots or anything like that. Doesnt help me at all, but its nice to know.
So after a desperate search, I found my old doctor, who I love and trust completely. His old practice had shut down, and I couldnt find him for a really long time. But now I found him and this new place squeezed me in this afternoon to see him. He really is great. He listens to every symptom and crazy thought in my head, and doesnt make me get flustered trying to rattle off a list as quickly as I can. I actually get to take my time to explain everything to him...So he mentioned a few possibilities that he was thinking (some kind of cancer, lymes, fibromyalgia or vasculitis were the main 4). But he said for now he wanted to try something easy and see if it works, so he gave me a B12 shot, and said to give it a couple of weeks. He scheduled me for a complete physical in 3 weeks (when he's gonna re-run all the bloodwork I had done already, plus run some extra stuff too). If it doesnt feel like the shot did anything meaningful for me for any length of time between now and the next time I see him, then we'll start looking into more frightening possibilities.
Im not crazy about still not having an answer right now. Its frustrating, and kind of scary, but I feel soooo much better knowing that I have a doctor again who I can trust to really stay on top of all this. Whatever is going on, he will find it eventually.
I'll let you know when i get any useful info.
Thanks again for everything, Ken. You've been so helpful, and sooo comforting. I really appreciate all your time and support.
It looks like you made some progress, Jaye; and maybe things will be better in three weeks - especially if the arm welling goes down. At least you know that the (new) old doctor didn't see anything alarming at this point.
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