Atypical Lympho Proliferative Diseases

I know this isn't exactly what you wanted to read but, of course, I'm going to tell you to see a doctor - but not the one you're seeing. You're right, you're very likely not getting good care. Certainly a second opinion is called for.

As is a specialist. One thing you might want to find out is have them test you for Hodgkins and non-Hodgkins lymphoma, as a swollen lymph node can be indicative of Hodgkins and it would, of course, be good to at least rule out those types of diagnoses. While the AFLH could be a precurser to cancer (I'm taking this info from you; I did not look it up), I think it would be wise to at least assure that you don't already have cancer.

Quitting smoking is, of course, good advice no matter what. Whether it's related, who knows, but it can't hurt your health if you quit.

Could a person have a benign lymph node on one part of the body, and yet still have another lymph node in a different part of the body be a lymphoma? Or would all the lymph nodes be contaminated?

Swollen lymph nodes can be indicative of certain types of infections............mononucleosis comes to mind. I would not fool around with a lymph node that is chronically swollen.

I was diagnosed with lymphoma in 1986. I had one swollen lymph node. They did a lymphangiogram (I don't know if they even do that test any more), which showed that all my other nodes were clear.

My advice to you is to have a surgeon biopsy the lymph node. With your symptoms I would not play around with it, but cut right to the chase. Then you will know for sure. For your own peace of mind, please don't wait.

Good luck..if you need any more input from me, I will be happy to assist you wherever I can.

Thank you Phoenix.
My brother was diagnosed with Hodgkins Lymphoma around the same year as your self. I drove him for his radiation treatments. He went through alot.
They found his lymphoma with an excisional biopsy.
How were they finally able to detect your's if they performed the lymphangiogram and it came out negative? Was your health progressivly getting worst as time went on since they told you all was clear?
Thats frightening and it's not the first time I've heard about misdiagnosises.
I guess it would be smart of me to pursue this and be persistent and get the best help I can get.
Were you having any symtoms before they diagnosed you and what made them finally biopsy it? Persistance?

The asymmetric swelling of the lymph nodes could be due to a wide variety of things. For instance, I had one swollen node in my neck. I ran to the Doc, thinking I had big time trouble (!). I did have at the same time, the remains of an infected tooth. I was supposed to have the tooth extracted, but had to cancel because something else, more important came up.

The infection from the tooth was causing the problem . I had the tooth removed and the node problem was resolved.

When a patient , such as yourself, doe not feel comfortable with their MD, I think it might be time to seek out another doctor. This is my opinion.

I agree with Miller. Find a better doctor. I had a doctor who didn't take my health complaints seriously, and never took a proper physical, until I showed up at his office with severe jaundice. He told me to go to emergency where, after almost ten days in the hospital I was diagnosed with an acute case of steatohepatitis (fatty liver disease). It will now take probably up to a year to recover, which may not have been the case, had he cared enough to catch the problem earlier. I have switched MDs and have a great liver specialist as well. It has made all the difference in the world in terms of my long-term recovery.

Thanks everyone.
I am so shocked and suprised to be at this point with my doctor. I really thought she was compatible to my needs. But when I found out that she's not taking me seriously, it really hurt me.
I don't just go to the doctors office for nothing. It takes alot on my part to have to call the office, shedule an appt. Leave work, and I mean, no work, no pay. I only go to the doctor unless absolutely necessary.
I find it an inconvience to go. So when I do go, I expect to be heard.
I've been putting off getting this weight loss issue looked at because my gyn dr. thought it was maybe related to cervical carcinoma. That's what the radiologist thought when he read the Cat Scan report. I had to wait for the surgery, then I thought my weight was stabilizing only to find out it;s dropping again. It's a few pounds every couple of weeks.
My first episode with lymph node enlargment was back in 1997. Now others are starting to enlarge. But not as large as that one. I've been tested for Taxoplasmosis,cat scratch fever, mono, HIV,etc.
I am very confused as to what it may be, and so is my primary doctor as I've mentioned.
I'm sorry to hear all the trouble you went through cavfancier. It's a shame your dr.wasn't listening either. It could have been caught earlier and treated. What does it take for them to listen? A full blown disease I guess, or a trip to the ER room? I understand doctors aren't GOD and that they make mistakes as well. My doctor brought that up to me on the last visit for some reason. I wasn't accusing her of anything. I was only touching base with her about the progression of my weight loss and how horrible I'm feeling. She's trying to push me off onto specialtists because she's at loss on what to do with me.
I understand there are benign conditions of the lymphatic system. This very well could be one of them. I don't really know and I'm hoping that the hemotologist next week does.
Otherwise, all I'm going to do is to stop going to doctors and waste away to nothing. I can't continue going to doctors if they don't know what's wrong with me. I don't think it's depression or a chemical imbalance. There would be other symtoms to that and I don't think one would have enlarged glands due to depression. I've experienced depression in my life years ago and know what it's like.
One can BE depressed with certain illnesses, but I really don't feel we make our glands enlarged because we're depressed.
Thank you all for your input and for sharing.

Did your doctor ever refer you to a specialist?

Cerival cancer is usually picked up via a PAP test.
Why did you have a CAT scan?

One other question, I forgot to ask. Is your doctor an MD and are you in the USA? If in the USA, which area are you in?

My primary dr.ordered a Cat Scan because of my lymphadenopathy, along with my weight loss and not feeling well. She was concerned because of my brother's history of Hodgkins Lymphoma, plus my two sisters had breast cancer and my father colon cancer.,etc, etc.
She referred me to a gyno surgeon because of all the abnormalities they found from the CT Scan.
You can have a form of deep cervical cancer and still have normal pap smears. Deep within the columnar channels. If they see something abnormal, it warrants a biopsy or further extensive testing to rule out CA. Alot of woman aren't made aware of this.
A pap test is just a screening test. Nothing more.
My dr.is an MD and yes, I am in the USA.
I am in N.Y. State, Westchester County.
My dr. is from India.
Plus I was referred to a general surgeon as well. To have my lymph nodes looked at.
The surgeon ended up removing a lymph node on the other side of my neck where I wasn't even aware there was an enlarged gland. He couldn't decide which one to remove. Under the arms, the right side of neck or left neck. He was afraid to biopsy my old one that was removed in 97 and has grown back because he said if he went in and discovered it was just scar tissue, he wouldn't be happy.
I could feel one by my salivary gland and he told me it's not a lymph and that its a salivary gland and he doesn't want to touch it with a ten foot pole. He told me an ENT should look at that particular one. He really should have removed the one under my arm.
my primary dr.wants to know why he didn't and to go back to him.
I will NOT do that though.
As you can see, it's turned into something complicated. I am getting nothing but referrals at this point.
I am finally going to a hemotologist,oncologist next week. Maybe this is all related to the initial diagnosis of the lymph trouble back in 1997.
I am embarrased to keep having to go to all these different doctors. Plus the fact it's time consuming and it's expensive, even with medical insurance. THere is still the copays I have to pay. But I have to get to the bottom of all this weight loss that just won't stabilize. I'm having fun eating foods in higher caloric value though. THat's what my gyno told me to do meanwhile.
THe woman at work tease me about all the food I can eat yet not gain any weight. I don't find it particulary amusing. It's really bothering me. No one is taking me seriously about how sick I'm feeling. THe weakness and the mental changes I'm feeling. My thyroid panel is fine accoring to my primary dr.
I can't eat alot of food in each course, but I can eat little meals,in multiple amounts during the course of the day.
Theres alot to consider it seems, and I never thought I'd be going through something like this. It's interfering in my normal life and I don't like it one bit.
I just want to get to the bottom of this so I can feel well again. I used to take my health for granted.

For weight gain, you might want to try some of that stuff which is sold to athletes looking to put on weight. I'm not talking about supplements; I mean the kind of powdered stuff which is often drunk to add bulk. Usually these are protein-based.

In Westchester County, you obviously have access to a variety of physicians and need not be limited to just the one.Unexpected major weight loss, coupled with swollen glands, can't be good in any event and, of course, shouldn't be ignored.

I have to choose from the doctors who are in the network. I usually just go to the drs who are local. I grew up in the area and have been here all my life.
I wouldn't know who to choose if I were to go out of my area. It's a fifty fifty chance that I'd strike it lucky. It's extememly hard to find a good doctor these days.
I thought the dr.I'm seeing now was good. Until something is really going wrong with my health and until she's faced with something that's not easy to detect am I able to tell she's not very good. Others may be crazy about her. But it's obvious she is of no help to me.
I didn't have any clue of her expertise when I chose her as my primary. She worked in the medical building I was working at the time.
Would I say she's a good dr. if she were able to find out whats wrong with me in a timely fashion? I felt I had to at least give her the chance, to put her skills to work.
You are right about the amount of doctors in Westchester, but how does one go about finding out who is good and who isn't. There isn't a book for that.

Since you're in New York State, why not try to make an appointment at Sloan Kettering in New York City? Commute into the City and at least you'll be in touch with expert professionals.

I thought you had to be referred there,with a diagnosis of cancer in order to get treated.
We have a Sloan right here in SleepyHollow adjacent to Phelps Memorial Hospital.
I thought all the patients I saw going in were going in for treatments.
Thanks for the suggestion anyway. It's something I can look into if need be. I just have to wait to see what the hemotologist says on Tuesday.
I guess I'm weak all the time because my red blood cells are low. I just had my lab work results faxed to my yesterday from my primary dr.s office.
It says low, but the doctor doesn't say anything to me about it because it's just past the low range by a few numbers. It was that way in February too. But the gyno dr.and the pcp didn't say anything to me about it.
I guess they'd say something if it's WAY out of range. Plus the MCH level is high. But as I stated, its just past the high level by a number. Nothing drastic. I don't even know what MCH stands for anyway.
Enough guess work, let the doctors figure it out. I don't have time for all this nonsense. It's really starting to get me aggrivated. I'm beyond the point of frustration. It seems like all the doctors I choose to go to are always in such a rush. Get them in, and out. It doesn't seem like they really care about the patient. There's no time to listen to them.
Enough of my whining. Sorry about that. I tend to get carried away on this subject.