Hello... I have been feeling "unwell" since August. Started with severe fatigue, low grade fever, swollen lymph nodes in back of head and neck and unintentional weight loss (13 pounds) I have been to almost every kind of specialist:
Infectious disease- ran a lot of blood tests, some of which came back out of normal range.. but not infectious. A few tests came back showing malabsorption.(B12, folic and Vit D low).
GI doctor-upper endo, colonoscopy(both with biopsies), CT abdomen and pelvis- Normal
Rheumatologist-Bloodwork and full body bone scan - Normal. Sent to Hem/Oncologist-
Hem/Onc-not worried about the size of my nodes... wanted to know "Why I was there to see her". Ran bloodwork to check to see if still malabsorbing.... Still waiting on results
Occipital nodes very swollen and so itchy waking me up at night-family Dr. orders ultrasound of neck - Shows enlarged nodes, but not large enough to biopsy. Radiologist notices thyroid nodules.
Family Dr. orders US of Thyroid-found "Multiple solid and cystic nodules" largest 1.6 cm - sent to Endocrinologist.
Endo - not too concerned with nodules, but wants to do FNB of largest just to be sure.
Family Dr. orders CT scan of head and neck. Just called me and said they saw several "dense spots" on base of tongue, wants me to see ENT for further evaluation.
My current symptoms: severe fatigue, pain in back of neck, L shoulder and L arm with weakness, multiple swollen nodes behind ears, back of head at hairline, neck, arm pit and groin, sore neck muscles(when I turn my head). Headaches daily, trouble sleeping due to sore neck and itchy sore nodes.
Can all this be caused by the "dense spots" on the base of my tongue? Should it have taken this long to find? I feel like I've been doing the "doctor dance" and going broke in the meantime. I am someone who just wants to know what they are dealing with ... so I can deal with it and move on. My quality of life currently is hugely impacted, I have zero energy and am doing everything I can just to make it through each work day. As you can probably tell, I am really frustrated by the time it is taking to get to a diagnosis. Is there a point where a doctor should put someone in the hospital to figure out what is going on? Any feedback would be appreciated.. Thanks for listening/reading.

An ENT who is experienced in treating oral cancer patients will be your best bet to determine what the "dense spots" are. It probably will need further examination including a biopsy.

Hope it does not turn out to be oral cancer!!!

Hi Sunny

Naturally we can't diagnose you but are happy to support and reassure you where we can.

Unfortunately, doctors are human too and medicine is almost never a case of adding up the symptoms to arrive at a definitive answer. It is often the consideration of a possible solution before ruling it out. This takes time.

A couple of things struck me whilst I was reading your story though.

Sounds like your family DR has it all under control though and is taking your malady seriously. Are you female by any chance?

All your symptoms suggest you are fighting off some sort of infection/illness and bloodwork doesn't necessarily uncover all infections. The first thing that jumped out for me was the neck ache and fatigue - I assume they have checked you out for meningitis? Thyroid issues? Epstein Barr Virus?

Getting a diagnosis is not always so easy but you do need to persist and try not to become disillusioned and irritable as you need your energy for well. Alex and I were initially quite distressed about having to sit for hours waiting for doctors, beds, results, Xrays, orderlies, discharge etc. This was extremely detrimental to what was left of Alex's well being. We finally acknowledged that the system was unlikely to change in our lifetime, so our best option was to work with it. I took knitting and books and Alex took his DVDs and a days supply of drugs with him. We also discovered every coffee shop within a 2km radius and discovered which ones got the sun at which time of day

I think you will become an expert "doctor dancer" by the time this is over but I have no suggestions regarding the cost other than weigh it up against the possible consequences of NOT seeing a doctor and getting this sorted.

Make your family doctor your collaborator and don't let the specialists intimidate you into silence. When the specialists tell you there is nothing that they can find - don't just let them show you the door. Ask them what next steps they plan to take. This lets them know that "passing the buck" or "wait and see" are not options and forces them to consider other avenues. If they suggest you return to your family doctor, ask them to write you a note as to what they recommend you should ask the family doctor to investigate next. Again, this makes it more difficult to fob you off.

You have heard the saying that it is the squeaky wheel that gets the oil? Never more true than in your current situation. Shout out long loud and often.

Did the infectious disease doctor do any tests involving your CD-4 count, and viral load. if not, you may want to ask about that also. Good luck.

Hi Sunny, welcome to OCF.

Anytime a persons immune system is activated for any reason you can have the symptoms you are having, either from cancer, infection etc. The triggers that activate your immune system also inhibit digestion and absorption, while increasing your bodies need for amino acids, specifically the amino acid leucine. Whatever the body isn't getting from nutrition it will kick into a catabolic state and begin to breakdown it's own "stores" to throw at the immune response. Generally it will start by breaking down lean muscle mass which is the easiest, fastest source of amino acids.

To help your symptoms and the way you feel address your diet while your physicians work on finding the cause. Up the amount of protein in your diet using a supplements, Whey is the fastest absorbing form of protein if you don't have dietary restrictions (vegetarian/vegan), Branched Chain Amino Acid supplements, and addressing your vitamin deficiencies through food which the body absorbs easier than isolate vitamin supplements. (fish oil is a great source of vitamin d and Omega 3's both of which will help your body metabolically, vitamin d being a prohormone sterol which is a precurser to testosterone and omega 3's helping digestion due to it's effect on insulin resistance, only downside typically being heavy metal content, Red Star T-6635+ nutritional yeast is a fantastic source of B12 and is vegan friendly, Folic is found in spinach which I blend in my shakes).

Other than that keep looking for answers and good luck.

Eric

Before making any drastic changes to your diet always talk it over with your physician first. They have your entire medical history and know you inside and out while we only have a few sentences to go by. Your family physician would be able to take the info Eric has given you and based on your individual medical state decide if this would be helpful or if any of it would be harmful to you. Please always check before making major changes.

Thank you all so much for your responses. I apologize for not getting back on sooner, still trying to wrap my head around the whole thing. I had no idea something like this could be contributing to my malabsorption, but it makes sense. I am trying my best to be optimistic about my upcoming visit(this Wednesday). Can anyone give me an idea of what to expect on my first visit to the ENT Surgeon? I am hoping he will be able to "scope" me, but am not sure if that involves another visit? I have some questions written down to ask, but am not sure if there are some that you all can suggest. I am also bringing my daughter with me to write things down, so I don't get too overwhelmed. Any input would be appreciated.
Thanks again!
Deb

A scope can and should be done on the spot - he could also do an FNA of one of your nodes but that is only as good as the tissue it picks up. Sending you well wishes, and hoping they figure it out.