So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hey all, sorry this is really long.
Some of you may have read other posts from me. I've been suffering with pains for 16 months. Still no diagnosis. Started with right side abdominal,flank and lower back pain. I went to three docs before one finally ordered an abdominal u/s. It was normal. Bloodwork normal. Then June of last year I started having RIGHT sided face/neck pain. TMJ type jaw pain. After 2 trips to the ENT, diagnosed with myofascial pain disorder.
I started having diarrhea every day in December, that lasted 1 1/2 months, then I started taking probiotics. The first day of probiotics it stopped and hadn't returned. Then last weeks my doctor said I could stop the probiotics and see what happens. The diarrhea has been back the last 2 days.
My hips, especially the left, have been hurting, as well as my whole left leg on and off for about 4 months. Since the end of January, the LEFT side of my face, neck and shoulder have been hurting and felt swollen. I've also had on and off rib pain and underarm shooting pains and tenderness.
I am now really worried about this left neck pain and swollen feeling. It's less a pain right now and more a feeling that somthing is in there causing pressure and tightness. The muscle, I don't know what it's called, that goes from right behind your collarbone to your neck, is MUCH bigger on that side. There is a small lump that moves around on the muscle, and I feel tightness up my neck, down into my chest and into my upper back. Not sure if this is tension or not.
I also have lumps in my abdomen that are tender when I press on them. When I lay down I can't really feel them, but when I sit up I can.
I had an abdominal CTscan in September. Last week I had bloodwork, all normal, and x-rays of my shoulders, hips and ribs, also all normal.
I have an apt. with a rheumatologist coming up, but I dont' know when. I've been to the doctors so many times over the last 16 months, I've seen 6 PC doctors and 3 OB-GYN, and 2 ENTs. I haven't gone at all for the left sided face/neck pain and pressure, cause I figured it was myofascial pain. But now the huge, hard mass, I don't know if it's actually my muscle or not, is freaking me out. That and the tender lumps in my abdomen. Could they be lipomas?
I also have a swollen lymph node in my neck, just under my jaw. It appeared when I had a cold in late January, but hasn't gone away or changed.
I e-mailed the doctor that the hip pain continues as well as leg pain, and all he said was to tell the rheumatologist. I think because he's refered me, he's done with me. I've seen him 3 times in the last 3 months.
I'm so worried I have Lymphoma or bone cancer that has spread.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
No one is responding, does that mean these symptoms don't sound like lymphoma, or that my post is too long!!?
I forgot to mention, I have a lot of red dots on my skin, especially abdomen. I went to the doctor about this last week, freaking out, and she, kind of laughingly, said they were hemangiomas. I then saw my mom and she has a lot of them. I've read they are hereditary, but I've read so much about red dots being a symptom of cancer. Now I'm worried the doc was wrong.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hi.
I am sorry nobody has responded. This board is usually slow on weekends.
I don't know what to tell you. Lymphoma usually is enlarged lymph nodes in the neck, armpit, and groin area, with itching and night sweats. Some lymph nodes take awhile to go down. Some never do.
Keep at with your doctors, write everything down and try not to look up too much information on the internet. That can be overwhelming, plus alot of information is incorrect.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hi wondering, sorry about your problems but don't put so much faith in the internet and your symptoms or you will think you have everything you read about. Don't get me wrong, these Boards are really terrific and when I first started reading them, I thought I had at least a half dozen diseases.
Have you been treated for GERD or IBS? It's sound a little like IBS because you get a lot of aches and pains from it. Pain in rib area, shoulder area etc.
I'm glad youe c-scans were good. Maybe stick to a GERD-free diet for a week and see what happens. Why were you on probiotics anyway? Also try to keep a list of what you eat and the pains and when they occur. Good luck
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
I started taking probiotics to see if it would help with the diarrhea. It did. I catch myself constantly hunching up my left shoulder. I guess I have a lot of tension there. I know that could be the reason for my left sided neck, shoulder, back and face pain. Not sure about the hip and rib thing. But the thing that really worries me are the one lymph node that hasn't gone down, it is soft still though, and the muscle in my neck/collar area that is so much bigger and bumpier on that side. I've got myself convinced that it has a huge tumor or hard swollen lymph nodes on it.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
I replied to one of your earllier posting but got no response after my comment. With all the pain, etc, has anyone even considered something like Lyme disease? You could be tested for Lyme disease- go to the Lyme disease board and check it out.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
My lyme teter was negative. I was thinking the same thing though because years ago I did habitat restoration for a living, and had ticks on me several times. Never actually saw one biting me though.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Just because your titer was negative does not mean you couldn't have Lyme disease. The ELISA test is often negative. Until I had a Western blot done at Igenex labs in Calif., mine was negative also. Unexplained focal pain in my hip was my initial symptom. With all your pain, lymphoma would not be the first thing I would be worrying about. Good luck and if you ever thought that Lyme could be possible, I would pursue it.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
How did you go about getting that test done for Lyme? I have Kaiser as my HMO, and can only get things done through Kaiser, unless I pay myself. And as far as Kaiser is concerned, I'm a hypochondriac. Bad thing about them is that all the doctors have the same access to my many visits in the past 16 months.
Good thing about them is my kids pediatrician is AWESOME!!!
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Unfortunately allergies can make us sicker than what people usually think of as terminal diseases. If you can go to an allergist and get tested for common airborne allergies, and food preservatives. I am allergic to almost anything that can make meat more tender or save vegetables or prepared canned soups. It is a hassle and every now and then I end up with such a bunch of foods with these things in them until I feel like I have a flu with runny nose and cough. When I stop the foods, I get better in 24 hours. The real flu last 10 days or more.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
wow. this is VERY similar with what i've been going through the last few months.
was convinced i had liver cancer when the first few lumps showed up. totally freaked me out. had complete blood work done and x-rays. everything seems to be wonderful. . . . yet, my right side aches or is uncomfortable 80% or more. i have little lumps around my rib cage and side. my lower back aches. in the last few days my hip has hurt on the right side, then last night my left hip. a few small lumps around that side as well. the doctor said i may have bursitis, which could explain some things, but not all.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Same here. In my case, I have not done a lot of internet research but at the same time I'm very unsatisfied as usual with doctors' cursory examination and non-thorough explanation: rushed out of my campus health center two days ago and the ER this morning, I still have a lot of questions. I have been diagnosed with lymphengitis but - and this might be where my ignorance reveals itself - I see that this can be caused by cancer and neither doctor spoke about or tested for this. My bumbs and sores are all on the left side of my body too - from halfway up my skull to my left breast and shoulder blade. What specifically freaks me out: why, if this is simply caused by bacteria, did it begin with a single bump in my neck exactly where I found a single bump (that didn't lead to anything) last year? Also, where can one find a more concrete outlet to channel aggression toward the institution of clinical medicine? Finally, what good is this site if there aren't any doctors on it - particulary, who can actually help wonderingtoo out?
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
I have ahd a lump in my neck for several weeks, been to doctors who seem to have the same 'not bothered' attitude. Bought a book called 'body's many cries for water' and started increasing water and salt and lump has just about gone within 4 days. Spent some time in a sauna which helped. Drank 5 litres of water and plenty of salt that day to compensate.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Quote:
Originally Posted by DebM412
I have heard a lot of people say their blood work was "normal" but were still diagnosed with lymphoma?
Occasionally, in the early stages, that is why a good doc will prescribe a sono or Ct scan, and then, if there are any nodes that show up abnormal, a biopsy.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hi I agree with Debs, If it was that simple to pick up people wouldn't have to wait ages sometimes for their doctors to diagnose it.
I have had lots of blood test's and the ones that they send off and take two weeks to come back, not the normal blood tests. Some of mine came back abnormal, ct scan showed enlarged spleen and nodes, still no diagnosis though.
I have a lot of the symptoms, and a biopsy showed reactive sinus hypercintosis? no one had heard of that?.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Fairy-Lights,
How many labs had a chance to look at the node biopsy? Here in the US it is typical to send to at least 2 labs, especially of lymphoma is suspected and the 1st lab says it is benign.
Do you have any more "big" nodes in your neck? I am wondering if a 2nd biopsy can be performed.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hi debs
They sent it just to the one lab to be looked at, but both nodes removed showed up the same thing.
I do have lymph nodes up on the other side of my neck as well, I do not want these removed as I am still trying to come to terms with the cut my ENT gave me, I am embarrassed to put my hair up any more as it is really big, because he decided to remove two nodes and not one!!
I have heard that not all lab specialists agree on the same thing.
Oh well, if you have any thoughts I would be happy to read them.
You didn't answer my reply to you on my thread, asking how you are? Let me know please...
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms.
Hi Fairy,
I am okay, I was very sick last month with the flu and then had female problems right after that. I was wiped out. Of course I had to stop running and exercising. I still am not back to where I was previously. I am going to go the doctor to talk about my female options. I have always had problems here.
In regards to my nodes, I have stopped touching the neck nodes and they have gotten better. I can only feel them if I search for them-so I don't. It seems that when I touched them a lot they grew some. Then, I hurt my left leg badly and it was beeding. I then noticed 2 small nodes in my groin area. Of course I felt for them, found them and have not left them alone. One is pea size and the other is a little bigger than a pin head. I just get so anxious about nodes. I know they get a little bigger when they are doing their job. Throughout all of the years of my life I probably had them do their job but never looked for them. So, now I am a bit paranoid about the groin ones. They have gotten smaller since they swelled after the injury.
That is it for now. I really hope and pray that you get answers.
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms. 
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms. 
Re: So worried that I have lymphoma and doctor isn't catching it. Lots of symptoms. 
