Have a few answers

[Persephone]

Hello all.  The first 3 days of this week has been interesting.  I was set to have a root canal on Monday which turned into tooth extraction Tuesday morning.  I am so glad that I had to have it removed instead because I literally was 2 shades away from vomiting all over the endodontist and his shiny shoes. 

Later in the day, Monday, I received a call from my radiologist that checked my neck ct scan.  He told me that he found a chain of deep cervical nodes that showed up and I also had a slightly larger submandibular node under my jaw.  I asked him if he had had time to check my new scan against my November 2011 scan.  He said he hadn't gotten the scan even though I signed a release.  So, he told me how to get the old scan and then to run it over to him asap.  It was late afternoon when I dropped it off.  At that point, I was a little nervous about the results but thankfully I couldn't dwell because I needed to get things ready for my oral surgery the next day.

Surgery went as well as I could hope.  The split tooth was split all the way below the gum, so I made a good call in deciding to forgo the root canal.  The rest of the day was filled with drugs, drugs and more drugs.  This morning, I received a call from my ENT and they left a message.  Paraphrasing..."We got your results.  There was nothing significant with the scan.  You're all clear."  At first, I was in shock...that was not the same feeling I got from my results call with my radiologist.  I was a little confused.  This afternoon, I received another message from the ENT that said "You need to call us and set up an appointment to chat with the doctor about your scan results."  Hmmm. 

I called the ENT and asked about my results.  I didn't give away that I had chatted with the radiologist and I knew at least one scan result.  I gently probed what 'all clear' meant to my ENT.  It means that there was nothing that was seen nor any red flags to watch.  I made an excuse about not knowing when I had a free day and hung up to check my calendar.  I immediately called my radiologist and asked what his thoughts were when he compared my scans. 

I have a submanibular node that has nearly doubled since last November and it has changed shape to a sphere.  I also have a chain of deep cervical nodes that I have more nodes in the chain than before.  Those nodes also turned into spheres.  While the chain of nodes raised concern with him, it was the submandibular node that caused the most.  Even though I have a history of sjogren's, he felt confident that this process was not from sjogren's and that his advice would be an aggressive check as to what is wrong with the node.  I kept asking questions and I also explained that the ENT gave all clear and that I was confused at the difference of opinions.  He asked if the ENT had said that after he read the addendum.  I said yes.  He point blank said that I was not 'all clear' and that I needed to get to a doctor that would check this out asap. 

So, anyone else dealt with a dr who can't read a results page correctly?  Anyone dealt with this type of health issue...problems with submandibular node and or the deep cervical chain?  I kept hearing a quote from my doctor when giving me my sjogren's diagnosis...."this is a very unusual and rare presentation of sjogren's."  Hmmm.  I am not asking to be cleared from having sjogren's.  I just want someone to acknowledge and act on the fact that I can have sjogren's but I can also have something completely different going on at the same time.   Ever since October, I've had a nagging suspicion about lymphoma.  I don't want it, but I've been unable to shake that vibe ever since.  Now I have proof for my inner nagging. 

So, for all you pros, who should I set up an appointment with next?  I don't want my ENT.  I think he is being reckless with my health.  I'm sure I will be swimming with sharks if I go against him and my primary but it's not their health.  So, who do I go to...hematologist, oncologist, another rheumy?  I need to be proactive and I would love your advice on where to go. 

Thanks...Persephone   

[slccom]

If you suspect lymphoma, I would make my next appointment with an oncologist. And call the radiologist back and ask who he would recommend that you see.

Write the ENT a letter after you have a diagnosis and tell him why you are firing him. You might also want to encourage some continuing education.

Congratulations on how very well you handled this! I bow down to you for your tact and persistence!

Sharon, who really, really hopes that the next doctor finds that there is  no real problem....

[sass]

P, 

Speaking of your ENT and his assessment...This is cruel.  It is unfair.  It is not rare.  I have had so many diagnosis and have them turn out an entirely different issue that it is a progressive epidemic.  Listen to your body, do  not  overthink but know  NO one knows it better than you..Go with that and find a different doctor. 

Just this lung disease I have now...After finally being sent to a pulmonologist, I see first his Nurse Practioner who does all the assesment and questions, HE comes in shake hands, "Ashely tells me of our breathing troubles, we are going to follow her recommendations, set up a few tests and get to the bottom of this, nice to meet you"   less than 3 minutes...poof..

A series of lung function test, blood work, CAT Scan ...Finally another appt...turns out with just ASHLEY, the NP...she reviews my tests with me and says I have some trapped air in the loser lobes, recommends some breathing exercises and will see me back in June..This was April... I asked about seeing the Dr..Well he also works in the ER and she sees his patients and they get together every WEEK ti go over all pts results and he pretty much folllow all her recommendations...She will see him and will discuss any course of action, but so far so good...Remain on the oxygen and try to expel the air trapped.  shakehead...vigoursly..hmm,,,,still since FEB..my only course of action is oxygen...i think no medication, no breathing treatment...nothing sounds right to me...Hubby says don't make it into something it is not...This is good, do the exercises and go for follow up in June and see the doc then...so I do.....

Flash forward to June...wait just a few minutes for doc to enter room (unusual)  .  He looks at us and says, well I got some news, as we wait for the all clear etc...and says  I feel like a kid that came to the birthday party with no gift.  I have nothing to offer...whhhhaaaaaaaaaaa.....
You have a severe lung disease called IPF and there is no cure and nothing other than a lung transplant.  I am making arrangements for that now.....Head does the excorsist spin.....You need to get going on this right away and I recommend a second opinion so that you have faith in my recommendation of Lung Transplant...Get a nebuloizer, breathing treatment every 2 hours, rescue inhalers, symbicort.....He apologizes for having to give me this horrific result that gives me very little time left......Husband head does the excorsist spin....The transplant team will be in contact.  They still will have to accept me and with this, they may not......
We leave and go shopping at Sams....in obvious shock....

one week later, second opinion doc says....This is not IPF!!!!   THIS IS SJOGREN'S!!!

I could go on and on with these misdiagnosis. have even spoke with lawyers....they don't want it..too many docs stick together in the white coat band and will not speak against another,,,but that was yrs ago,,,FIND ANOTHER DOCTOR NOW!!!!!  DO NOT WASTE ANOTHER SECOND...INSIST THAT YOU HAVE A RADIOLOGIST THAT SAYS YOU HAVE A PROBLEM AND NEED TO BE FAST TRACKED!!!!!!!
I am praying for you now!   ~sass~      please let us know asap

[Joe S.]

It sounds like you are running into the doctor problems that most of us have run into. The others have provided you with some good advice. Take an advocate with you when ever you see a doctor.

[irish]

I can imagine that you have many thoughts running through your head at this time. Try not to panic yet.  I am really interested to know if you had a crack in that tooth for many months and if it was on the same time as the nodes.

There are times that a long term chronic infection can affect the lymph nodes. The nodes set up a barrier to protect us from infection. When they do this they enlarge. Don't forget to mention this tooth extraction and the crack to the doc who is checking out your nodes. Good luck. I will keep you in my prayers. Irish