Discussions By Condition: I cannot get a diagnosis.

Swollen nodes, fatigue, cronic low grade fever.....

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Mandee930
  • July 18, 2007
  • 06:00 AM

My name is Mandee and I am 25 years old. I am going to try and keep this short and sweet. Okay so I have been suffering from low grade fevers for about 9 months now. I have been on 9 rounds of antibotics in 4 months, HIV neg and Hep neg, blood test are high end of normal, and I have a high heart rate. I just had my axialary lymphnodes biopsied and results were neg for infection but did show reactive cells (whatever that means). I have 5 submandibluar nodes that are swollen but not painful all ranging from 2cm and up. I have had an abnormal CT showing submandibular glands and a subclavicular mass on my left side. I have been suffering headaches off and on and my face feels heavy. I am meeting with my ENT again this friday and he is biopsing my cervical nodes and I am having my throat scoped. If anyone can help with any tests that should be ran....maybe for a viral infection or someting else I would greatly appreciate it. I am a single mom and I am getting really worried.

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8 Replies:

  • Hi Mandee,Your concern is understandable. Your doctors are at least, it seems, taking you seriously. The biopsies are definitely a good idea; any time you see things like a low-grade fever coupled with swollen glands, I would think red flags would go up. The reactive cells might have something to do with a substance those cells reacted to...ask them to explain. Demand details. This is your health, after all, and the doctor's primary function is to serve YOU. My first thought on this is lymphoma, and I don't mean to frighten you. The fever, fatigue, swollen glands...it could be some sort of viral infection, but generally when the nodes swell in reaction to infection, they are tender when palpated. Have you experienced any unintended weight loss? Night sweats? Any patchy rashes or itchy skin? I sympathize with you on this one, too. I've got 4 large swollen nodes in my neck and one in my side below my ribcage, along with a recurrent cough I've not been able to get rid of. I've gone from being about a size 10 to a size 4 since March...and while normally I might celebrate this, due to the circumstances it's worrying. The stomach problems and stabbing pains I've been experiencing are, I hope, just due to nerves.I just wish I could find a doctor to take me seriously!Ask your specialist if there are any further tests they could perform to rule out various viral infections. I'll keep you in my thoughts, too, and hope for the best.
    Anonymous 42789 Replies Flag this Response
  • Thankyou for writing me back. I have had cronic low grade fevers for about 9 months now along with night sweats, weight loss, loss of appetite, and a ton of rashes and unexplained lumps. I am a Radiology tech so I actually understand what is going on to a point which scares me. I just had surgery on my swollen axialary lymph nodes and now I am told they want to do a needle aspirate of my cervical nodes. I was told by numerous physicians that an aspirate is a bad way to go if it is cancer so I am pushing to have some removed since I am having left side facial pain due to the fact the masses are on the facial nerve and my carotid artery. They have ran so many viral tests and they are all negative. Have you had yours biopsied yet? I am really thinking its lymphoma and thats what all my docs are leaning towards. I am scared because I am a single mom and I want this handled now before its to late. Thankyou.
    Mandee930 1 Replies Flag this Response
  • My name is Mandee and I am 25 years old. I am going to try and keep this short and sweet. Okay so I have been suffering from low grade fevers for about 9 months now. I have been on 9 rounds of antibotics in 4 months, HIV neg and Hep neg, blood test are high end of normal, and I have a high heart rate. I just had my axialary lymphnodes biopsied and results were neg for infection but did show reactive cells (whatever that means). I have 5 submandibluar nodes that are swollen but not painful all ranging from 2cm and up. I have had an abnormal CT showing submandibular glands and a subclavicular mass on my left side. I have been suffering headaches off and on and my face feels heavy. I am meeting with my ENT again this friday and he is biopsing my cervical nodes and I am having my throat scoped. If anyone can help with any tests that should be ran....maybe for a viral infection or someting else I would greatly appreciate it. I am a single mom and I am getting really worried. Mandee,I really sympathize with your story. I’ve been experiencing similar symptoms, with the same kind of run around. All my lab tests have come back normal. I don’t have medical and spent a small fortune on doctors and lab work, with no answers. Although it is a lot of you don’t have cancer, HIV, lupus, thyroid issues, etc. I have a chronic low grade fever (99 to 101+), pounding heart, night sweats, sweaty feet, swollen glands above my collar bones and behind my knees. (No pain). It started around Christmas 2009 it’s been seven months. I’ve gradually gotten better, my hands don’t shake anymore, my heart’s not pounding AS hard, I don’t sweat every night, the swelling has gone down but not gone away. I showed someone the swelling in my neck and she gasped and said “ I had the same thing happen to me it was a viral infection (her WBC count was high) that they couldn’t pinpoint and I felt like I had the flu for 3 months.” Since bacterial and viral infections mimic each other maybe it’s a bacterial infection that they can’t identify…???:confused:Have you felt any better? Is there a horse nearby? Do you have any pets? (I ask because my dog has gotten swollen salivary glands, twice, the second time the swelling traveled down her neck the vet doesn‘t know what caused it, but antibiotics and steroids cleared it up). I have some good days but when I have bad days it’s really bad. I can’t even imagine having a child to take care of, I feel infantile myself. If I had medical I would have put myself in the hospital back in 09. I can’t work because if I over do it I wind up feeling worse. I’ve seen an ENT, general practitioner, and a infectious disease M.D. and no answers. Please keep us updated on how it’s going.:o
    Anonymous 42789 Replies Flag this Response
  • Mandee,I really sympathize with your story. I’ve been experiencing similar symptoms, with the same kind of run around. All my lab tests have come back normal. I don’t have medical and spent a small fortune on doctors and lab work, with no answers. Although it is a lot of you don’t have cancer, HIV, lupus, thyroid issues, etc. I have a chronic low grade fever (99 to 101+), pounding heart, night sweats, sweaty feet, swollen glands above my collar bones and behind my knees. (No pain). It started around Christmas 2009 it’s been seven months. I’ve gradually gotten better, my hands don’t shake anymore, my heart’s not pounding AS hard, I don’t sweat every night, the swelling has gone down but not gone away. I showed someone the swelling in my neck and she gasped and said “ I had the same thing happen to me it was a viral infection (her WBC count was high) that they couldn’t pinpoint and I felt like I had the flu for 3 months.” Since bacterial and viral infections mimic each other maybe it’s a bacterial infection that they can’t identify…???:confused: I have some good days but when I have bad days it’s really bad. I can’t even imagine having a child to take care of, I feel infantile myself. If I had medical I would have put myself in the hospital back in 09. I can’t work because if I over do it I wind up feeling worse. I’ve seen an ENT, general practitioner, and a infectious disease M.D. and no answers. Please keep us updated on how it’s going.:o I suggest for you to look up Chronic fatigue immunity dysfunction syndrome. Your symptoms along with the post exertional symptom eg worst after trying to work or over doing it. Is an indication it may be CFIDS. CFIDS can appear quite virally, like the flu.. or even have severe neurological symptoms. http://wwcoco.com/cfids/bernesx.html is a good symptom list based on actual studies done. CFIDS the canadian consensus defination of CFS... or what the CDC call ME (note they see as different to CFS... the english confuse the picture thou as in England they call CFS, ME).. The waters on this all CFIDS, CFS, ME are muddied seeing countries have their own definations and what is something in one country is completely different in another. Thing is all these people are ill..and are having the same conditions (thou called different things). http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html (note bottom paragraph.. CDC says ME and CFS are different illnesses. Due to all the world wide confusion (the CDC keeps changing its definations which dont match other parts of the world!!!)... please check out the canadian consensus CFS defination which you may (depending if you suffer from other symptoms too) fit and hence then know what kind of specialists and support groups to seek out from there. Most with CFIDS, ME or whatever you are going to call this subgroup of CFS (if one is going to lump it in with that).. end up on disability pensions, it is a quite serious illness. Also many other illnesses often coexist with it so having a specialist for it is very helpful............. My blog here at this site.. "My CFS/ME history.. How it all started" tells my story of how I was constantly mistaken for having "viruses" till i finally was diagnosed.
    taniaaust1 2267 Replies Flag this Response
  • I suggest for you to look up Chronic fatigue immunity dysfunction syndrome. Your symptoms along with the post exertional symptom eg worst after trying to work or over doing it. Is an indication it may be CFIDS. CFIDS can appear quite virally, like the flu.. or even have severe neurological symptoms. http://wwcoco.com/cfids/bernesx.html is a good symptom list based on actual studies done. CFIDS the canadian consensus defination of CFS... or what the CDC call ME (note they see as different to CFS... the english confuse the picture thou as in England they call CFS, ME).. The waters on this all CFIDS, CFS, ME are muddied seeing countries have their own definations and what is something in one country is completely different in another. Thing is all these people are ill..and are having the same conditions (thou called different things). http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html (note bottom paragraph.. CDC says ME and CFS are different illnesses. Due to all the world wide confusion (the CDC keeps changing its definations which dont match other parts of the world!!!)... please check out the canadian consensus CFS defination which you may (depending if you suffer from other symptoms too) fit and hence then know what kind of specialists and support groups to seek out from there. Most with CFIDS, ME or whatever you are going to call this subgroup of CFS (if one is going to lump it in with that).. end up on disability pensions, it is a quite serious illness. Also many other illnesses often coexist with it so having a specialist for it is very helpful............. My blog here at this site.. "My CFS/ME history.. How it all started" tells my story of how I was constantly mistaken for having "viruses" till i finally was diagnosed. I read the link you provided and had a "Eureka" moment. THANK YOU! Now I know where to begin.:)
    Anonymous 42789 Replies Flag this Response
  • My name is Mandee and I am 25 years old. I am going to try and keep this short and sweet. Okay so I have been suffering from low grade fevers for about 9 months now. etc... I am a single mom and I am getting really worried.!. Have you had the gardasil vaccine ? if so go to truthaboutgardasil or letstalkaboutgardasil and the moms there will help you with your issues- they have had to learn how to help their own girls- without the med community because they were told nothing was wrong or everything was wrong- thus not much help - they are still at it but you will have a community to help you and live the nightmare with you- if you did not take the gardasil vaccine- haleluiah! get off of the artificial sweeteners that are poisoning everyone- aspartame in gum, diet sodas, over 9,000 products including crystal light and ocean spray flavor packets YUCK! poison- aspartame is an amino acid- natural true - but without its corresponding amino acids it wreaks havoc in the brain- seizures, strokes, etc...burns the brain by letting too much calcium enter- avoid sucralose-splenda or those little packets- ( sweet n low is the only one that has never been proven to cause damage to anyone) sucralose shrinks the spleen and thyroid by 45%, if causes calcification of the kidneys and damages the liver! it is also HIGHLY addictive so the food people are putting it in everything even the stuff with reg. sugars in it cause they know it will keep people coming back !avoid those like the plague- read the labels and boycott those products- I even boycott the companies but I am trying to take back the food industry- I mean a bit of junk is one thing but BLATANT POISONS- sorry can't deal with the quantities of people being hurt by this! and congress knows but they are being out numbered by those who take incentives from the corporations who are prospering $$$ by keeping it on the market- sorry :( I know that is sad but just google Dr. Louis something or other and congressional hearing and Oren Hatch! you will find it! STAY AWAY from the artificial sweeteners except sweet n low- read ALL LABELS BEFORE YOU EAT OR FEED TO FAMILY FRIENDS- and aspartame goes by many names to avoid being found so GOOGLE aspartame and learn all you can - they are about to change the name again! educate yourself on foods- artificial sweeteners and do all you can to stay up on it! Farms do deliver and perhaps trading will help for those who no money- free food for advertising for example- or for volunteering at the farm! they are local and on line and you can make friends- help each other to get the word out and REAL food in to the cupboards!
    founddog 188 Replies Flag this Response
  • My name is Mandee and I am 25 years old. I am going to try and keep this short and sweet. Okay so I have been suffering from low grade fevers for about 9 months now. I have been on 9 rounds of antibotics in 4 months, HIV neg and Hep neg, blood test are high end of normal, and I have a high heart rate. I just had my axialary lymphnodes biopsied and results were neg for infection but did show reactive cells (whatever that means). I have 5 submandibluar nodes that are swollen but not painful all ranging from 2cm and up. I have had an abnormal CT showing submandibular glands and a subclavicular mass on my left side. I have been suffering headaches off and on and my face feels heavy. I am meeting with my ENT again this friday and he is biopsing my cervical nodes and I am having my throat scoped. If anyone can help with any tests that should be ran....maybe for a viral infection or someting else I would greatly appreciate it. I am a single mom and I am getting really worried.I agree with the person that suggested possible Lymphoma. But I am also wondering about Hodgkin's Disease. I have a friend that had that, and he survived and has 3 children and has been in remission for about 10 years. It is VERY treatable! But he had all the symptoms you listed. He even had swelling in his face. Just be persistant about getting answers! It is your health, and you have a right to have them explain it to you in a way you will understand. Ask what results mean. Make a list of all your questions and take them with you to the doctor. If someone can go to your visit with you, and you are comfortable with that, do that. A lot of times when we are scared, overwhelmed or not feeling well, we don't process things the doctor tells us. Or ask questions we may have later. It's always good to have someone that can help you with that, that can write stuff down that the doctor says (test results, medication orders, instructions) and ask questions when you may not think to. Also this person can help you to later process everything the doctor tells you, and may simply act as a "second pair of ears" to confirm what you heard, and fill in any gaps. Good luck to you!
    Anonymous 42789 Replies Flag this Response
  • Have you ever been bitten by a tick or been in a tick infested area even if you don't think you were bitten? I have some of your symptoms and was ultimately diagnosed with Rocky Mountain Spotted Fever. It is an inexpensive blood test to be tested for the 3 tick borne bacteria. The most common is Lyme disease. If one has it or Rocky Mountain Spotted Fever (RSMF) long term, it causes all kinds of symptoms. Many people have one of these illness and never realize it until long after their infection date. Many people do not get the classic rash for RSMF or bulls-eye for Lyme disease. Initial symptoms within a few weeks after the bite might include stomach or intestinal upset so might be attributed to eating something bad or a viral infection.My symptoms include fatigue, headaches, low grade fever (before I got on the right antibiotic), mental fog, aches and pains, swollen lymph glands, sore throats, loss of appetite, occasional weird twitches. I was diagnosed over a year ago but may have had this for as long as 10-12 years based on the existence of the low grade fevers and fatigue that I have off an on for a period of time. For some reason though all the symptoms became worse and more persistent last year which drove me to be tested. Thankfully, the doctor tested me for all 3 tick borne bacteria or I might still be wondering.
    outdoor 4 Replies
    • August 23, 2011
    • 07:23 PM
    • 0
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