I had my biopsy. I have Sarcoidosis. I dont have any scarring in my lung. My liver spleen kidneys are all swollen. My lymph nodes are 4 times larger than they arre suppose to be. I get sick when I eat doc said because every thing is so swollen there is not much room for my stomach to expand from the food. Doc says 2-3 years is the average time for the symptoms to go away on their own. They may come back sometime in my life, once you have sarcoidosis you always have it. The meds i wasnt allergic to had to many side effects so I am going to do this med free and try to eat things that ease the symptoms (inflamation) i have found out Pineapples help with this. Cucumber juice will cleanse the liver, onions cleanse your organs. Green tea will help with the fluid build up and inflamation. So hoping to make all this go away.
They did check for heppatitis, it was neg. After my tests I have had recently my family doctor has sent me to a cardiac surgeon. So far he did a stress test . Next he is doing a biopsy of some of the lymph nodes. Then a PET scan. I made an app. just to talk to my family doc. It seems they reallly are suspecting it may be cancer. I really am not prepared to hear that. I have been through every emotion you can think of. I have told my docs for a few years of how I feel and ask why is this or that going on. Always explained away. I was in the hospital in 2008 with similar but less severe symptoms. They just wanted to keep checking my heart and put me in the KDMC Heart Center did a CT scan and stress tests. In 2008 I had one swollen lymph node. Which I wasnt even told about till last week(2012). Now I am covered in them on my lungs, aortic arch, esophagus, sternum area. Have this cough that wont go away and staying lifeless. I have seen in my community so many times this tri state area. You go and go to the doctor not figuring anything out then finally years later you have something terrible and die two months later. Happen to a man on our FD a few months ago. Whatever this is since right before Christmas has really gotten worse and ???? I have had a chemical smell in my nose(only I smell) for over a year now. Been gettign choked for over 8 mo and they neverr seemed concerned about it. I dont know if these are the lymph nodes I feel, (dont know if you can feel them) but for a couple years I even told them about all the painfull little knots/lumps on under my skin that make it painfull when I am laying dow,. Well I have whinned enough. Thank you both for your replies to my question. Guess I will find out more whenever they finally schedule the biopsy. Thank YOU
I have Sjogren's Syndrome and have read it affects the lymph glands.
Lyme disease has to be tested with specific tests.
My white cells were not showing signs of infection, yet I had 3 tick borne diseases.
Any intrusion into our systems can trigger lymph enlargement. Mine have been large for years.
I assume you've been tested for hepatitis.
Thank You, I will look these up. My doc called today I see a cardiac surgeon tuesday to set up a biopsy. She said I dont have any infection showing in blood work or urine.
Hey Angela,
I feel sorry for your suffering. You sure have enough on your plate!
Let's see if something would make some sense.
1.You have an underlying undiagnosed infectious condition.
2.You have a "diagnosed" A/I disorder like lupus or other.
Either one aspect of these 2 or combination could be responsible!
( I'm confident that your Doctors ruled out possible acute infections like
Rocky Mountain Spotted Fever! and such. Did you have any fever and
were you enjoying any outdoor activities in the last 1-2 weeks?)
Genetic predispositions may get activated by imbalances caused by
#1 and /or #2, leading to a possible impaired enzymatic function directly linked to metabolic disorders, implicated in Hepatosplenomegaly.
(greek origin: Hepato meaning of Liver, Spleno meaning: of spleen, Megaly meaning condition of enlargement- " Enlargement of the Liver and
Spleen Condition"-my Greco-Roman linguistic studies come in very handy in medical terminology!-)
Preceding Hepatoslenomegaly is a mast cell accumulation within various
organs , accompanied by swollen lymph nodes.
(look up mastocytosis as you may have a variant of systemic mastocytosis)
Ask if you can be tested for a deficiency of the enzyme glucocerebrosidase.
If the test is positive then it verifies this suspicion.
There are other possibilities, but your symptomology is consistent with
Hepatosplenomegaly, barring the presence of any undetected acute infections.
Swollen lymph nodes are associated mainly with viral, parasitic and bacterial infections, cancer and sarcoidosis.
Please do your own research to verify the above and to get more detailed information
Hope it helps you find some answers.
Wishing you well.
Niko