Discussions By Condition: I cannot get a diagnosis.

I'm thinking lymphoma but can't get dx

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: panhandle
  • August 17, 2007
  • 10:01 PM

About a year ago I started having terrible headaches and noticed a lump growing on my upper forehead. Primary sent me to Neurologist who confirmed walnut sized hemangioma of the skull. Had craniectomy to remove growth. Headaches stopped for a while then came back with a vengence. Started having drenching night sweats once or twice a week along with fatigue. In January primary sent me to gastro who suspected lymphoma. My little sister is just now in remission after stem cell transplant. Gastro removed one node from my neck , one lipoma from my breast and another lipoma from my lower back. These all came back fine. All my blood tests came back within normal limits except for RA factor wich tested in the 600 range three different times. Went to infectious disease doc who could not come up with anything. Went to rheumatoligist who could not find anything. This all concluded in April with no resolution or DX. Primary said I was probably imagining it. Went to Psychiatrist who said I was not imagining it that my symptoms are real. I decided to just tough it out. Since May I have gone from 195 lbs to 167 lbs. Night sweats are not as frequent, but I still have them. In July my thigh has gone numb from the knee up. I'm still fatigued and have no appetite. I just don't feel well at all. I'm going to schedule a visit with a new primary to start over with a clean slate. I was just wondering if there was anyone else out there who has gone through something similar?
Thanks for reading, Bob

Reply Flag this Discussion

10 Replies:

  • Hemanioma of the liver is associated with night sweating.
    aquila 1263 Replies
    • August 20, 2007
    • 07:44 PM
    • 0
    Flag this Response
  • Dear Bob...you are not alone, even though it may feel that way. I too was very sick with all of your symptoms and then some. Even the night sweats.Have you had an HIV test? I am negative but continued with night sweats. I had severe chronic fatigue syndrome symptoms. I was convinced I had carcinoid and at one point, lymphoma as well...but I don't.Someone here in this forum suggested NAET/Bioset therapy. She said she had my symptoms too and that the therapy resolved her symptoms. I was desperate so I went.No kidding, my symptoms are 90% resolved. check out www.naet.com and www.bioset-institute.com I was not required or asked to purchase any products. I was only given 6 Bioset treatments and I am on my way back to work for the first time in over a year.My symptoms were debilitating and ruining my life. I took control and now I am back...here....helping others find their way in the dark... Hope this helps...check it out...you won't be disappointed!!regards,mommy cat:)
    mommy cat 1654 Replies
    • August 21, 2007
    • 00:18 AM
    • 0
    Flag this Response
  • Mommy cat, Did you have swollen lymph nodes?
    DebM412 8 Replies
    • August 21, 2007
    • 05:09 PM
    • 0
    Flag this Response
  • I'm thinking lymphoma also. Get a new doc. Can you see your sister's oncologist?
    rad-skw 1605 Replies
    • August 22, 2007
    • 09:17 AM
    • 0
    Flag this Response
  • Dear Deb... My lymph nodes were VERY swollen..hence the HIV testing. I complained of a "lump" in my throat for over 10 years..test after test (CT's) revelaed nothing. Finally I demanded an MRI of my neck. I had a "cyst" on my thyroid, a "cyst" on my spine and several areas of lymph nodes on both sides of my neck. My ENT wants to biopsy them to be sure it's ok.I was told Carcinoid cancer...wrong..I thought I had lymphoma too...wrong Please take my advice Deb, I'm trying to help. This forum is where I got help and was able to get my life back. CFS is a real disease and the symptom list is vast. I suffered for a long time. I found a doc who diagnosed me but it didn't help. 2 scripts and I was sent on my way.Eatafruit78 told me she had done NAET and it helped her immensely.I'm here to help...mommy cat:)
    mommy cat 1654 Replies
    • August 22, 2007
    • 11:37 AM
    • 0
    Flag this Response
  • Thanks for the replys guys. I do have a node in my groin that is now swollen and one under my jaw on the left side that is bigger then a pea but smaller then a little gumball. It's been awhile since anyone has looked at them. Called my neuro and he got me in at the University of Kansas school of Medicine. I guess if they come up empty, I'll give it a rest. I just feel like I owe it to my wife and my boys to get it settled one way or the other. Again thanks for taking the time to post. The world could use more people like you two. Panhandle
    panhandle 5 Replies
    • August 22, 2007
    • 05:57 PM
    • 0
    Flag this Response
  • Dear Panhandle... I took the liberty of looking for an NAET practicioner in your state... here is the link http://www.naet.com/subscribers/doctorResults.asp?FromQS=1&db=default&uid=default&City=&State=KS&Zip=&Last=&Country=&Status=on&sb=4&view_records=Search You can also visit www.bioset-institute.com for those practicioners in your area. I did Bioset because that is what was close to my home. I was not disappointed!! I have not had ANY night sweats or swelling of my lymph nodes since my treatments. My other 68 symptoms have disappeared as well!! When you see the neurologist, please ask him to accept or refute CFS as a diagnosis. It is a real disease. I know, I was sick with it for a long time. Hope this helps. May God Bless you and your family...mommy cat
    mommy cat 1654 Replies
    • August 22, 2007
    • 06:20 PM
    • 0
    Flag this Response
  • Panhandle, KUMedCenter is an excellent hospital. It is right around the corner from my house. (But I don't work there). If you are flying in, the limo can take you to KU for $40 which is ridiculous. Send me your e-mail address if you would like me to pick you up at the airport and take you there. Free to a fellow Kansan.
    rad-skw 1605 Replies
    • August 25, 2007
    • 10:38 AM
    • 0
    Flag this Response
  • Rad, Thanks so much for the offer. I'm actually going to the teaching med center in Wichita. I live about 30 min from the center so it won't be a problem. I've been fighting this thing for 18 mos. I've seen some of Wichita's best. Finally gave up but when I started shedding the pounds and my leg went numb, I know they all missed something. With my family history and my symptoms, I've just got to rule out lymphoma or something else. Again, thanks for the offer. It is great to live in the heartland amongst good decent people. Dennis Rader excluded lol.
    panhandle 5 Replies
    • August 25, 2007
    • 00:38 PM
    • 0
    Flag this Response
  • Dear rad, I smiled ear to ear when I read of your offer to panhandle. It is nice to know there are people like you out there, even if we don't always see eye to eye. Thank you for being a kind soul as the world certainly need more of them:D Panhandle, when you go to see these doctors, please have them consider CFS/Fibro as a diagnosis. It is a "real" disease and I can send you a lot of information on it if you wish. I have done a lot of research regarding these issues as I have realized most of my family is affected by either CFS/Fibro or both. There is even some MS. Here is something that may help. Fibromyalgia is very closely related to Chronic Fatigue Syndrome (CFS), the main difference being that with CFS, the predominant symptom is fatigue; with fibromyalgia, it is pain. Fibromyalgia is a rheumatic disorder that most commonly affects the neck, lower back, shoulders, back of the head, upper thighs, elbows, buttocks, knees and the upper chest. It is important to remember, however, that the achy, burning pains of the disease can strike any part of the body. The pain and stiffness is typically worse in the morning and is often accompanied by insomnia, headaches, depression, brain fog, incoordination, digestive disorders, dizziness, panic attacks and skin rashes. The immune system of an affected person is often hypersensitive and allergies to environmental and dietary factors are common. Symptoms can be aggravated by allergies, overexertion, lack of sleep and acute infections.Fibro and CFS overlap, like many illnesses. There are many similarities. A person may have both, like I do. headachesnight sweatsfatigue- CFSsister with Lymphoma...untreated CFS often leads to lymphoma. These diseases run in families.Many docs, no answers...been there...done that...Primary doc tells you that you are "just imagining it" ..WOW!!!!!! That's a good one...just "imagining" weight loss and lump on forehead...LOLYour psychiatrist is the only one who seems to know what is going on. What I have realized is that "mental sickness" stems from untreated physical sickness.Think about it....your brain is an organ...so is your liver. If you are ill, many organs are not functioning properly...not just one. make sense? I wish you the best in your endeavors. When you figure out your "diagnosis", do yourself a favor and just try the therapy I've recommended. We are both in the same boat...only difference is, my symptoms are almost completely resolved. Best regards,mommy cat:)
    mommy cat 1654 Replies
    • August 25, 2007
    • 01:58 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.