[limichelle]

Not diagnosed, but have questions about symptoms

by limichelle on Sun May 15, 2016 7:34 am

Hello,

I see the hematologist / oncologist this coming Monday.

Some back story:

At the end of February I started having some GI problems. I had a CT scan and they found swollen lymph nodes. Well I didn't think much of it. Until I started getting more swollen lymph nodes under my arms and neck. I started to feel very lethargic, and then came the night sweats.

I saw my primary care physician and asked if this was hormonal since I had a hysterectomy back in 2014 at 31 but still have one remaining ovary. My worry was the remaining ovary was quitting on me.

He told me that where my lymph nodes were it didn't have anything to do with my ovary, separate things all together.

He told me to keep an eye on it.

Towards the end of March I scheduled an appointment. By then I was sleeping most of the day because, even though I went to bed early, my night sweats woke me up at 2:00 a.m right on the dot.

Plus my neck was swollen. I had a thyroid ultrasound and a neck ultrasound (well a partial neck ultrasound) and there was discovered swollen enlarged lymph nodes.

My doctor thinking I'm fighting an infection put me on antibiotics while drawing blood work for autoimmune, HIV and TB and other viruses and fungal things like valley fever.

The tests came back normal. I was relieved, still I wasn't feeling well.

He said to keep an eye on it.

Well in April at the end I saw him again.

I told him, I can't get out of bed, my night sweats are horrible! He felt and noticed I had more swollen lymph nodes.

I had different blood work done by a different doctor around that time. It showed elevated albumin and low globulin and there was a note suggesting possible autoimmune, infection, or multiple myeloma.

My CRP was also elevated.

I had the CRP test done when I went to the ER back at the end of February when I started to feel unwell.

The primary care sent me to an infectious disease specialist who brushed me off telling me I'm fine.

I went back to the primary care in the first week of this month. Now I'm seeing the hematologist / oncologist this coming Monday.

My primary care doctor thinks I have an infection somewhere in my body and now need extra help locating it.

I hope this is an infection and that's all it is.

He did mention bone marrow biopsy might need to be done by hematologist to rule out blood cancers.

I'm pondering if this is an infection wouldn't it be septic a lot.

Sooner? Not drag on for a little over three months. I have had sepsis before. It hits you fast and you are very sick from it. So if I had an infection it would have gotten worse and turned septic and I would be In the hospital, just my rational.

The infectious disease guy didn't think it was an infection at all.

Other things I'm having is achy bones. It feels dull the pain in my legs, and back. It doesn't feel like I strained anything, just like an arthritis type pain. I don't have arthritis but it feels from what I have seen with my mom that type of pain.

I'm not overthinking or saying its cancer. I just wanted to vent and get my frustration out about the symptoms. It's getting to the point I have little quality of life, I'm not as hungry, I'm sleeping my days away, and I'm up at night because I'm drenched literally putting my head in the refrigerator door and wet wash cloths around my neck.

Also the weak bone ache feeling.

Also my neck is very swollen.

I just wonder since my blood work is basically normal except for the elevated proteins. Also the enlarged lymph nodes, what the oncologist can do for me?

Don't they go by blood work and not symptoms?

Sorry to have written a novel, I just feel frustrated and sick not knowing what's wrong with my body.

I came here to get insight and advice,

Thank you,
Lisa

[Multibilly]

Re: Not diagnosed, but have questions about symptoms

by Multibilly on Mon May 16, 2016 8:56 am

Hi Lisa,

Sorry to hear you are enduring all of these issues.

I'm not sure what to say about your constellation of symptoms, but I'm glad you are seeing a hematologist. If you want to rule out a plasma cell disorder such as myeloma (given your elevated protein level), the hematologist can run the following simple tests:

Serum immunofixation
Serum protein electrophoresis
Serum free light chains

The hematologist would almost certainly run the above tests (and maybe a couple of other serum or urine tests) before resorting to ordering a bone marrow biopsy to check for a blood cancer such as multiple myeloma.

Let us know what you find out at your appointment and good luck.

[limichelle]

Re: Not diagnosed, but have questions about symptoms

by limichelle on Mon May 16, 2016 9:59 am

Hi,

Thank you for your response. I feel relieved that he will order more blood tests before resorting to bone marrow biopsy. My mom has had a bone marrow biopsy before and she told me they are painful.

I see him this afternoon so I will be sure to keep you all updated.

Lisa