Symptoms

I'm sorry for your lack of help in finding the source to the problems you discribed.  I will be honest, I'm not a doctor rather a lymphoma patient.  Some or your symptoms sound indicative of lymphoma while others do not.  

By all means be your own advocate and demand answers, never be dismissed because this is your life and your health depends on it.  Doctors make mistakes.  If you look at one of the leading causes of death in America you may discover medical error.  Doctors work for you.  There are wonderful doctors out there who will not let any stone go unturned until they find a reason for your ailments.

I would seek out a oncologist, hematologist.

Best of luck to you.

As mentioned, I'd also suggest looking for a new doctor in the form of an oncologist…specifically a hematological Oncologist.    

Where are you?  U.S.?  Other countries?  What insurance do you have?   

I would find the best Lymphoma treatment hospitals nationwide (try Lymphomation.org and click on Doctors right at the top).  Look for those that have “PI” or “ES” or “SPORE”.  (There are only 3 U.S Hospitals that have earned a SPORE designation.)   

Then I would get on the websites of the most geographically-desirable ones, get their phone number for “new patients” or select “new patients” from the phone menu then “scheduling”.  Try simply saying:  “I’d like to get an appointment with Dr. XYZ, one of your hematological oncologists, as soon as possible, please”.  See what happens and then just take it from there. You’ll probably be transferred a bit, but some of these places (even the most famous of famous) may will take you without a referral if your insurance makes them smile.  

Be prepared to outline (at some point while on the phone) your swollen cervical (neck) area, your itchiness, your unexplained weight loss, perhaps your drenching night-sweats.  

You’ve certainly been diligent in seeking answers…you deserve to have the medical community actually HELP you and that usually means a good diagnostician.  They’re a lot harder to find than most people think.  And as 007 said, you must be your own advocate.

Good luck and keep us in the loop.

Paella

po18guy said:

This does not sound like

This does not sound like lymphoma to me. If it was, with the numerous symptoms that you are reporting, you would likely have easily detectable tumors all through your body. Those would be detectable by physical exam, X-ray, MRI, ultrasound or CT scan. If it began producing symptoms two years ago, you would almost certainly have much different, and much more serious symptoms. Unless it was a very slow-growing type, you would not be here after two years of untreated symptomatic lymphoma. Many of the primary lymphoma symptoms are absent. The erosive gastritis and hernia can account for the lower body pain, and the stress and frustration of all this can produce the upper body pains and weight loss. Really.

Regarding the bloodwork, I do not know if doctor checked for LDH, but if it was substantially elevated, that might provide a direction to go in. Elevated LDH is consistent with tissue breakdown, and that is observed in many conditions, lymphoma being only one of them, but inflammation being another. The inflammation that doctor noted can cause general discomfort, joint pain and even sharp pains or other health conditions if the inflamed tissue is impinging upon nerves or organs. That, and the low WBC are consistent with an infection or possibly an autiommune condition. Keep in mind that there are 80+ autoimmune diseases that may produce your symptoms as well as those of some cancers. But, autoimmune conditions are not cancer. Rather, they are a malfunction of your immune system.

Can lymphoma or some other blood cancer be absolutely ruled out? Not at this point, but I do not see them as being likely. Do seek another doctor, as a second opinion, especially in the case of an unidentified condition, is highly recommended. I hope that the cause of all this is soon found.  

This does not sound like lymphoma to me…if it began producing symptoms two years ago, you would almost certainly have much different, and much more serious symptoms…Unless it was a very slow-growing type, you would not be here after two years of untreated symptomatic lymphoma. 

I have to differ with you, po18guy. 

I’m told that after 3 or maybe even more years of symptoms, tumors are rarely detectable by x-ray much less by a physical exam.  I’d be curious as to what percent of lymphomas are diagnosed in the indolent stage? 

7+ years ago, in seemingly the peak of health and activity level with nary even a cold for years (at age 59) I began having a positional backache.  It was only when supine or ¾’s prone, always located between spine and kidney area and only on one side.  It was mild and not constant and, since I’m rather prone to lower back pain I just assumed that’s what it was.   

After it became 2-sided and nightly (only when reclining…no problem when standing, walking, sitting or running) I started seeing MD’s.  One suggested tennis elbow (my elbow was bothering me, by golly).  Another suggested a back x-ray.  (I should note that I requested that this doc be sure she thought I should have a CT scan since it would be a straight out-of-pocket expense for me.)  So, post-x-ray: the diagnosis was arthritis which I was eventually told 2 months later.  I figured that if SHE thought an x-ray was sufficient and then didn’t even bother to let me know until I CALLED for a PT referral, then no worries.   

Less than a year later I was diagnosed with stage 4 nhl dlbcl plus stage 3 folicular.  Admittedly, I didn’t have much in the way of additional symptoms until the last few months before diagnosis.  Finally, a 3 weeks before diagnosis I went to a community ER, had a kidney ultrasound and a CT and was encouraged to see “a multi-disciplinary team of oncologists” due to my “extensive retroperitoneal lymphadenopathy”.  

That was 4 years and 3 months ago.

paella said:

I see how one might question lymphoma...but

This does not sound like lymphoma to me…if it began producing symptoms two years ago, you would almost certainly have much different, and much more serious symptoms…Unless it was a very slow-growing type, you would not be here after two years of untreated symptomatic lymphoma. 

I have to differ with you, po18guy. 

I’m told that after 3 or maybe even more years of symptoms, tumors are rarely detectable by x-ray much less by a physical exam.  I’d be curious as to what percent of lymphomas are diagnosed in the indolent stage? 

7+ years ago, in seemingly the peak of health and activity level with nary even a cold for years (at age 59) I began having a positional backache.  It was only when supine or ¾’s prone, always located between spine and kidney area and only on one side.  It was mild and not constant and, since I’m rather prone to lower back pain I just assumed that’s what it was.   

After it became 2-sided and nightly (only when reclining…no problem when standing, walking, sitting or running) I started seeing MD’s.  One suggested tennis elbow (my elbow was bothering me, by golly).  Another suggested a back x-ray.  (I should note that I requested that this doc be sure she thought I should have a CT scan since it would be a straight out-of-pocket expense for me.)  So, post-x-ray: the diagnosis was arthritis which I was eventually told 2 months later.  I figured that if SHE thought an x-ray was sufficient and then didn’t even bother to let me know until I CALLED for a PT referral, then no worries.   

Less than a year later I was diagnosed with stage 4 nhl dlbcl plus stage 3 folicular.  Admittedly, I didn’t have much in the way of additional symptoms until the last few months before diagnosis.  Finally, a 3 weeks before diagnosis I went to a community ER, had a kidney ultrasound and a CT and was encouraged to see “a multi-disciplinary team of oncologists” due to my “extensive retroperitoneal lymphadenopathy”.  

That was 4 years and 3 months ago.

 

 

 

 

 

 

 

Dkeys,

Along with everyone else, let me welcome you here. I hope the Board is useful to you, but that you discover soon that you have no further use for it (due to not having lymohoma).

Geeze, you have a veritable Bohemian Rapsody of symptoms.  But they are all so disparate -- apparantly unrelated.  As PoGuy mentioned, for all of these things to be of lymphoma in origin you would have to have serious, advanced lympohoma indeed. Lymphoma that would have been caught before now.

Joined with your negative CT of the pelvic region and the negative scoping of your GI trac, with negative biopsies, my strong sense is that what you are dealing with is something other than lymphoma. The ulceraton in your stomach and the hiatial hernia probably account for several of your symptoms.  I too have a severe hiatial hernia, decades old. It is so pronounced that people can hear it at times sliding in and out of the diaphram.  This caused me severe chest pain in the past, so bad that an ER thought that I had angina.  But the pain was proven to be gastronomic in origin.  My surgeon has recommended against surgery, and it is well controlled with Prilosec or similiar drugs.  I read a study in the 1980s that concluded that close to 50% of all ER chest pain arrivals, in patients who did not already have established coronary disease, was later determined to be gastro in etiology (causation).

My layman's read of your medical facts at the present. Obviously you need to continue demanding answers and seeking them. The swelling of the leg and discoloration in particular is peculiar,

max