Doctors won't listen to me. Possibly lymphoma?

[alianoel]

Hi there. I am new to the community and looking for some advice and support on how to get my doctor to take me seriously. I have a had a few swollen lymphnodes in the chain that runs down the left side of my neck for about a year and a half. When it first started I went to the dr. and he gave me some antibiotics to see if it was an infection. Nothing changed with the antibiotics and when I follwed up my dr. said he wasn't too concerned and to keep an eye on it. A few months later I went to an ENT and he said they weren't more than a centimeter and to watch them and did no further testing. I have not had medical in years and I'm sure this is why they send me packing. Today I went to a new doctor (still no ins.) and paid her to say the same thing to me. Right around a cm. for one of them and a few smaller ones. She said it "isn't cancer" and she could send me to an ENT if I wanted but it would be silly. First it's foolish for her to make such a statement as it "isn't cancer". Second she tried to refer me to a private ENT where I will not be able to get finacial aid or payment options. She could full well refer me to have a ct or biopsy within the hospital system that her office is a part of and I could get help. I don't understand why it is any sweat off her back. Here are my symptoms that she is saying are "nothing to worry about":

One larger and two smaller lymphnodes on the side of my neck (as far as I can feel)

A large knot on the left side also just below the base of my skull (which she thinks is just a muscle knot)

Randomly I get these weird little clear bumps on my trunk or arms/hands, usually one at a time and they itch like crazy but a dr I saw a while back for something unrelated said it didn't look like hives.

And recently I have been really itchy on my trunk and neck with no apparent irritation of the skin. Sometimes it's just my neck.

I have Celiac Disease and went undiagnosed for at least 8 years before going gluten free.

And this is a weird one. I read at night before bed, on my stomach with my chin propped on my pillow. Lately as soon as I start falling asleep, I get jolted awake gasping for air as if I choked. You might say that I am probably crushing my windpipe as I fall asleep, but I have been reading like this for years and this has never happened until last month and now it happens almost every night.

I don't have night sweats and I don't think I have fevers but I don't ever take my temp.

I am worried because I have Celiac Disease which raises my risk for Lymphoma by a lot. Any advicee would be greatly appreciated. Maybe it's nothin, but I don't want them to end up saying "if we listened to you we may have been able to treat this but now it's too late:" I have seen that happen and I know people who have had lymphoma with barely more than a little lump and a cough. I am sick of drs. thinking that symptoms are all or nothing.

[aldunn72023]

Find you another pulmonologist.

[cpyct]

Alianoel,
I hope everything goes well.  I have been battling multiple health issues (mainly breathing) for the past 3 years.  Still feel the doctors are missing something.  I recently was told they had exhausted outpatient services.  If I get short of breath, go to ER.  This particular Pulmonologist from Beaumont in Troy, Michigan knows my history.  This has been going on for three years.  How can I go to ER everytime.  Unfortunately I feel it was his was of saying he couldn't help me.  I am glad you found someone to take you seriously.  Let us know how it goes.  God Bless.  :)

[thyroidian]

Good luck on the CT scan, and the blood tests
Nicola

[alianoel]

Thanks everyone. I called the nurse and told her all of my concerns and how it shouldn't be any sweat off the doctors back to send me for testing. I have to pay for it, not her. She was very understanding and said she agreed with me and would talk to the dr and call me back. She called me back a little while later and said they had scheduled me to go in to the hosp. and have a ct and that the dr. wants me to come back to the office lab and have some blood tests. Funny how when she is pushed to give me a ct she figures she better do her job right and throw in some blood tests. The nurse was so awesome and I am grateful for that. My ct is today so we'll see what comes of it. Thanks for the encouragment.

[aldunn72023]

Alot of times the swollen lymph nodes on your neck are caused by infection or virus.  Its your lymph nodes way of fighting off these infections and viruses.  I once had this same problem, but only had one that was swollen.  It stayed this way for quite a long time and my doctor finally referred me to an ENT who thought it was infection or viral related, but was willing to biopsy it if I wanted.  Of course I opted to just wait it out and after about a year or so, it finally went down.  As soon as it went down, I came down with a serious case of mononucleosis which kept me incapacitated for more than 12 weeks.

I dont know how long your lymph node has been swollen but if it has been for quite some time and you are concerned about it, you should see another physician.  If you are not satisfied with an answer, always seek a second opinion, or a third or even a fourth if you have to.  They can be life saving.  Your doctor should not have said it would be silly to send you to an ENT, she should feel silly for saying it.

I would recommend having a CBC done to check  your white count to see if the cause of the lymp nodes are fighting off an infection or virus.  I would also recommend having it biopsied if the CBC is normal.  Definitely talk to your friends and ask around to try to find a good doctor who is there for the patient and not for the money.  Make sure they know everything that is going on and tell them that you are deeply concerned and you want everything done possible to be sure that this is not something more serious.  If you have a teaching hospital anywhere around you, they should have ENT's and oncologists there that can see you, and where you should be able to receive financial assistance.  If a doctor refers you to another and you do not want to see that doctor, you can always request a change of doctors.  

I hope this helps and hope you are able to find a doctor who will listen to you and your concerns.  I also hope you feel better soon.  Please keep us all updated and let us know how you are doing.

[thyroidian]

Have you had any blood work done regarding these lymphnodes, if you you should be demanding some, especially with the itching skin also.

You doctor doesnt seem to be taking this very seriously, and im afraid she should be doing.

Either see another doctor , or you may have to change your attitude with your present GP and start demanding, say your not happy, and you want this looking into further.

Good luck, ps have you been tested for the epstein barr virus, or mono?
Have you had a full white blood cell count?


Keep me posted good luck

Nicola

[notw777]

I am very sorry to hear that, if a doctor does not take you serious go to another one, make them take you serious, and tell them you want them to run tests and exam it to find out what it is.. i will be praying for you. God answers prayers :)