Omg, I'm in the same boat, although your work up is much more extensive than mine (no scoping and no bone scan yet). I have been having the same symptoms as you except I also have a constant fever and slightly swollen lymph nodes in the groin. I have seen four GPs and just like you, they didn't take it seriously and are clueless. I asked to be referred to parasitic diseases department and they refused.

I'm so weak. I don't even have the energy to brush my teeth. I went to the Emergency Room recently and there was nothing they could do for me. It has been a year of hell. I don't even have the energy to drive anymore. I have to ask my 80 years old dad to drive me. I'm feeling so bad right now cause I don't want to be a burden to my parents.

I got no appetite too. I try to eat soft food but every time I eat something, my body gets so hot and I get so dizzy and i have to stop eating and go and lie down. I have lost of lot of weight and still losing weight. My body seems like it's dying and it's going to shut down soon. None of the GPs know what s going on but when I ask them to refer me to the parasitic disease department, they plain refused me.

I went to a private GP recently and was referred to an oncologist. I'm hoping to get a PET scan or a bone scan or something. I suspect it might be a blood/bone cancer of some sort. Have you seen an oncologist? I think it's a hematologic cancer of some sort or a parasitic disease such as Visceral Leishmaniasis or maybe it's a fungal/mold blood infection. I already had IV fluid twice (the basic kind) and it didn't help at all. Recently I found an article about Visceral Leishmaniasis so I'm going to ask my GP for an antibody/antigen test for Visceral Leishmaniasis and maybe a fungal/mold blood culture. I read that a msdiagnosis of VL is dangerous, as without proper treatment the mortality rate for this disease is close to 100%. Please mention that to your doctors. Let's hope we will get a proper diagnosis and treatment soon. 

Could you be suffering from chronic fatigue syndrome? Were you dealing with a lot of stress before you got sick?

This is honestly crazy my doctor is blaming on severe depression but I know it is not that as can't even leave the house or drive as get this weird sensation. Like my body is so weak I don't feel Adraline anymore. What tests have you had done? Blood cancers would show in blood test and have had 3 done. How would you get tested for bone cancers? I've had ct scans with contrast and all my tests come out amazing that docs think I'm making it up. The thing is you can get cancer anywhere in the body. The only parts I haven't had checked is my legs, arms and penis. I'm the same when eating so do not eat as much as I used to. Honestly from speaking to you I know that this is not normal the way we are suffering. I've had an antibody blood test all came back normal. I do not know what to do. How do I speak to a oncologist? What does he think about the way you are feeling?

Hey I thought about that however it's not just the fact I feel extremely weak and fatigue. I have constant fever, I can't do anything not even drive a car. It's seems like the end is near all I do is sit in bed. Had multiple tests been to A&E like 5 times, got taken by ambulance last week it's just getting crazy for me

Hi James, tests I have had:

CBC x 3: low platelet count but not that serious (latest one was normal), some of the components of the white blood cells were low (lymph and eos, but they weren't too concerned about those)

TSH x 2: all normal

Cmp x 2: normal

UA chemistries x 3: non remarkable

CT abdomen and pelvis w contrast: non remarkable

Scrotum U/S x 2: shows a stable cyst

QuantiFERON In Tube: negative

Syphilis screening: negative

QUANTIFERON TB GOLD: negative

LDH: normal (actually lower than normal range)

Hepatitis panel: negative

Cortisol x 4: first three were low because I was taking an appetite enhancer, latest one was normal

Folic acid: normal

Vitamin D: normal

Vitamin B12: high

Sed Rate: normal

C-RP: normal

Lipid profile: bad cholesterol was a bit high

HEMOGLOBIN A1C: normal

Glucose poc: normal

ANGIO-CONV ENZYME: normal

SPEP (to check for Myeloma): shows polyclonal gammopathy, doctor said it's not concerning

ACTH x 3: lastest one was normal (adrenal insufficiency was ruled out)

CAT SCAN OF CHEST CONTRAST: non remarkable

Prolactin: high

FSH/LH: normal

Testosterone: low

Free T3: normal

Free T4: normal

Cortisol Free, 24 Hr Ur: normal

echocardiogram: nothing serious

24 HOUR HOLTER MONITOR: nothing serious

UREA NITROGEN/CREATININE: normal

MRI BRAIN COMBO (to check for hypopituitarism): pituitary gland leans to the left but otherwise non remarkable (normal)

ANA: negative

SARS-COV-2 RNA, QL NAAT, RT PCR/TMA (COVID-19): negative

FINE NEEDLE ASPIRATION CYTOLOGY: non-diagnostic due to errors

Done while in the ER:

EKG x 2: non remarkable

HIV screening: negative

Troponin I x 2: normal

CBC: low eos and lymph

BASIC METABOLIC PANEL: normal

CREATININE POC: normal

CHEST X-RAY 2 VW: non remarkable

oh wow very similar to me with your workup and everything is normal. This is honestly crazy. The thing is what is a pet scan going to show that a ct scan with contrast wouldn't? also i went private for ct they said this is best for what i am looking for in terms of cancer in the body. I am not show what could be causing this for us. Could be a penile issue, maybe something wrong in the legs or arms but i am just guessing. Are you completely bedridden? what is the next step of action for you? also what does your onologist think about your condition? sorry for all the questions. From the symptoms we are suffering from just hard not to think cancer. I feel awful and feel like i am in complete survival mode.

PET scan will light up if there s cancer. It's much more accurate than the CAT SCAN. My CBC did show low EOS and lymphocytes (before it was low mono and neutrophils). I really don't know if those are concerning or not. I guess the oncologist will help with that (will see her in a couple of days).

I will do a Covid antibody test, a EBV, CMV tests probably next week. I'm too weak right now, that's why I kept delaying those tests. 

Yes, I'm basically bedridden. Got constant fever as well. The only time my temperature is normal is when I'm sleeping. I'm taking alprazolam to help me sleep. Without it, I will probably die due to the inability to fall asleep (anxiety). Can't drive. I tried to drive the car the other day and when I got home, I was completely out of energy, was so dizzy even while lying on the bed, was having shortness of breath, felt like I was dying. Feels like all the cells in my body are so starved. This disease seems to want me to stay in bed and just die. It won't let me eat. My body is not getting the nutrients. It's dying. 

I'm trying to find a CFS forum so I can ask others about the symptoms of chronic fatigue syndrome. Serious case of CFS is debilitating (completely bedridden). Not much is known about it. They don't know the cause of CFS. The thing about me is, I have chronic stress and insomnia so I don't know if that has anything to do with my illness. Maybe I have CFS and it was due to my chronic stress and insomnia. 

Okay cool i am going to ask for a pet scan head to toe but it worries me the amount of radiation. Is your oncologist worried at all?   

Will be seeing the oncologist for the first time in a couple of days. My plan is, I will get a k39 antibody test to check for Visceral Leishmaniasis (a parasitic disease), Covid antibody, EBV and CMV tests and maybe a blood culture of some sort (fungal/mold) etc. 

Okay cool thank you for sharing with me. Are you not going to do anymore cancer tests?