Frustrated Update

Well, the chest X ray and CT would've shown if you had any lymphnodes swollen in your chest. So, they may be a good sign that you DON'T have lymphoma. Plus, the fact that you're having pain in the nodes as well. Most lymphoma patients will tell you that there's not any pain with their swelling nodes.

MTGirl, I hope you get to the bottom of this terrible mystery. NHL is hard to DX and the only way to confirm it is to have a biopsy of one of the swollen nodes. As far as pain from nodes, mine were sore and tendered. I think it depends on the location of the nodes and what nerves are being pressured. I finally was correctly dignosed from two biopsies from two different node areas, because of question arising about the type of NHL. My first biopsy was done after being sent to an Eye Ear NoseThroat specialist, but this was after several months of seeing my primary care doc, who also ordered an ultra sound that came back negative on a very large neck node. then I was sent to an allergist who took twelve vivals of blood and did extensive skin test, all negative including no Luekemia, (which I do actually have as part of my SLL/ CLL diagnoses.) After several weeks visiting the ENT, on another round of the strongest antibotic, he finally decided to get a scan, which looked suspious, finally decided to do a biopsy, which came back positive for an Agressive form of NHL but, but a second opinion proved I actually had a slow growing type. So what I am saying to you is you are not nuts, you must persevere until things are ruled out. And the only way to do this is with a biopsy. I hope it is negative, but I also hope you get some answers either way. Try and not read too much until you have a biopsy done. You do not need anymore stress and with over 35 + different types you will only add to your anxiety. It is good some things have been ruled out. Good luck and let us know what you find out, GmaKB

As I said before you need to see a pulmonologist, if you can't breath it won't matter what you have you will be dead. Go to a lung doctor (pulmonologist) NOW! And follow thru with your breast biopsy, once you get those results you will know where to go from there. If the Pulmonologist is not conected with where you had the ct,chest x-ray done...call that office and have them sent your films and results to his office so he can see what is going on.

Nope you aren't crazt but probably very stressed!

MTgirl,any update?

I pray you find your answer, treatment and relief ASAP.
Take heart, and do what you need to do....

Tricky. I had shortness of breath, but then I had a mass on my chest that showed up on an x-ray. I lost weight steadily, and my "get-up-and-go" had got up and gone. I almost passed out when doing the pulmonary test. There are similarities to your experience, but there are so many things it could be, and lymphoma is only one of them. I found out the hard way that it isn't always easy to diagnose. You need answers, and I hope you get them soon.

UPDATE:
Had a Diagnostic Mammogram and 2 Ultrasounds Friday on the breast lump. Then met with a general surgeon for consult.

What the surgeon said ~

- 3 Small cysts found in my right breast; all diagnosed as benign. No need to remove at this point.

- The lump in my left breast is 1.3cm and not a cyst. At this point it appears to be benign, however because of the location it is too difficult to be 100% certain so I am on a 3 month "watch and wait" which means in 3 months I will need another Mammogram and Ultrasound to see if there has been any changes. At that point a surgeon can help me decide if it should be removed. It's not painful so I'm okay with keeping it for the 3 months.

- The lymph node in my neck that is enlarged is definitely "Reactive" (meaning that 'something' has set it off). Because my CBC's have all been clean it's not infection/viral/bacterial based. At this point, removing it and a biopsy would be extreme. His recommendation was to wait and see if any others React. (UPDATE: As of today, Monday, this lymph node has been enlarged since Wednesday night and is not getting softer or smaller. And, no, I'm not touching it - you can see it protruding if you look at my neck. As of this morning no others appear to be enlarged as far as I can tell.)

- My cough (upon deep breath/exhale), chest pain, and shortness of breath are definitely not Asthma related. Lungs are clear & no wheezing. I was checked for Congestive Heart Failure at the E/R earlier this week and that came back clean; but what I am experiencing falls under "classic CHF" according to the E/R doctor. So the surgeon was stuck as to what could be causing the symptoms. (Yep another doctor who sent me out of the office unable to take any sort of deep breath).

- The chronic itching I have been having he called 'idiopathic' since he could not find any signs of "allergic reaction", any rashes, or bites. While this may not seem like a big deal; there are several serious conditions in which itching is a big symptom so I feel it is important to keep noting.

- The pain I am having is definitely in lymphatic locations, however without "bigger symptoms" (more Reactive lymph nodes) there really isn't anything he, as a surgeon, can justifiably do about it.

So at this point, I am still severely lethargic, unable to take a deep breath without a struggle, in constant chest/ribcage pain, and severe pains in my shoulder blades, lower back, and my right-hip/thigh/knee area. Plus a plethora of other totally seemingly-random symptoms that all appeared between 6-7 weeks ago. I am still keeping my journal. And I am very much looking forward to moving back East soon so I can hopefully find a doctor who can help me. My immediate plan is to hopefully find someone who specializes in the lymphatic system and/or autoimmune disorders since that appears to be the only common denominator at this point in time. If anyone has any thoughts I'm open to hearing them. I know someone mentioned a Pulminologist, but if my lungs are clear is that really the best route to go first?

I am working on getting an appointment with an allergist/immunologist; hopefully this week.

Pulminologist? Probably not. Haemotologist? Over here in UK, Hodgkins comes under that heading, although the distinction may be no more than a subtle one. Might be worth asking.

I know you're frustrated and probably feeling like you're going in circles. Just keep at it! You need to trust your gut and keep after these doctors until they figure out what's going on.