Bad symptoms are only getting worse, but no concern from doctors

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I've had some chronic issues for nearly two years- severe fatigue and digestive issues- and have yet to get a diagnosis. I had pretty much resigned to the fact that I'd just have to learn to live with it, but symptoms have been appearing that I cannot ignore and things are going downhill so fast. Four months ago, I noticed several swollen lymph nodes in my neck. In a period of less than three months, I lost at least 30 lbs without any explanation. I saw an ENT who said he saw nothing concerning but ordered a CT of the neck, the abdomen, and a chest X-ray. All clear with the exception of the swollen lymph nodes, which are still not a concern despite their persistence and accompanying symptoms. A month ago I developed constant pain under my rib cage which has not been explained. This past week, my ribs have swollen to the point that it is visibly noticeable. I have several lumps in my breasts that were said to be fibrous tissue, a swelling on my breastbone that has not been explained, and lumps in my abdomen that I was told were fat deposits. I have seen a total of 7 doctors in the past 2 years and not only has there been no explanation for my severe and worsening fatigue, unexplainable weight loss, persistent swollen lymph nodes, and a number of additional symptoms (including night sweats, mysterious bruising, among a number of others), but there has been no concern for my health. Even though it seems to me that all signs point to cancer, regardless of my tests so far, I realize there are quite a number of other possible explanations. But no one will biopsy one of my nodes, or do a bone marrow biopsy, or any test that would rule out cancer. And whatever is causing everything, it is ruining my life. I get worse and worse all the time and no longer have any quality of life whatsoever due to the constant fatigue, weakness, and worsening pain. But every doctor says there's no cause for concern, likely nothing serious. My most recent appointment ended with the recommendation to take vitamin supplements, as that would likely clear up all of my symptoms he said. Am I losing my mind in believing that constant pain and worsening fatigue and severe weight loss and all of these lymph nodes that never go away are actually a cause for concern? I keep expecting my symptoms to warrant some kind of urgency in getting to the bottom of this, but no matter how bad things get, the response is always the same. How can you get well if you can't find a doctor who is willing to determine the cause of your illness? I don't even know what to do anymore if no one will help me figure out what is wrong. I apologize for the lengthy post but I'm so hopeless at this point and am desperate for any advice anyone might have in finding the right doctor who will do a biopsy or try to figure this out somehow. I'm getting really close to just giving up at this point.

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  • Posted

    Hi Mspaulson,

    Many people on this site, including me, can sympathise with your plight. So many of us are ignored or the "we know best" mantra is used over and over. The best advise I could give you involves money, it really does talk. If you can afford it you need to get a private consultation with a specialist. Much of what you have been told is probably true. Once fatty deposits start appearing it is easy to go allover the body and find others. Only one of these need to be troublesome. The problem with the human body and brain is that they can work against each other as well as help each other. If one is under stress it can affect the other and give symptoms that we link immediately to our worst fears. You know your body better than ANYONE else. Try to look on the positive side rather than the negative. You will sort this out, but you must control your fears, see a specialist within the cancer clinic possibly, and hopefully get yourself sorted.

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    • Posted

      Thank you for your response. You're right about stress bringing up the worst fears with every new symptom that appears. That's what's so hard about being chronically ill for years with no diagnosis- you have no way of knowing whether something is cause for concern or not. Some of my symptoms are obvious- the continuous rapid weight loss, for instance, but many others are not. For example, I've been having these purple blotches that cover the entirety of my legs to the point that they appear severely bruised. But by the morning, they've gone away. I try to ask myself, would I have been concerned about this two years ago, or am I only concerned because of everything else that's going on. But I can't even remember what it feels like to be normal and healthy anymore so I honestly don't know. I was always one of those people that never went to the doctor unless it was completely unavoidable, so I probably wouldn't have worried about it, but it's so strange to see my skin look that way that I really just don't know. I'm torn between not wanting to overreact to everything needlessly and wanting to take note of any symptom that could possibly make a lightbulb go on in one of these doctors' heads. So I'm pretty much just always confused. I can't stay positive anymore, but I'm not expecting the worst either. I think a number of things are equally possible explanations, as is something that hasn't even occurred to anyone yet. I'm not fearful of the diagnosis at this point because I'm so desperate for one. I just want to find out what is happening to me. Once that happens, I'll deal with whatever it may be. My sole focus right now is just getting some answers, since that's the only way a plan for recovery can be formulated. And I'm really trying not to lose my mind in the process. I recently made myself an appointment with an oncologist/hematologist at a cancer center. I don't know if he will be able to figure me out, but at least he seems willing to try. I'm hoping with every breath that I finally get some kind of answer when I see him again in a couple of weeks, whatever the answer may be.

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  • Posted

    You have my total attention and sincere empathy as we apparently share MANY of the same symptoms for a LONG time. Doctors finally found a few test anomalies which explained some of my symptoms but it's been like pulling teeth to get them to order further testing or send me to a specialist to get to the bottom of of it all. So far I've been diagnosed with gastritis (2nd time in my life), severely eroded esophagus (not yet Barrett's or cancer) which was no surprise as I've had reflux problems for decades. Then mild cirrhosis of liver although I've never drunk alcohol heavily or regularly. Now a thyroid nodule has enlarged and become partially solid. Bloods show consistently low white blood cell count, high ast liver enzyme, low transferrin and high eosinophils but they were going to just take a wait and see approach. I was flabbergasted to say the least. I mentioned pain and much burning in areas of pancreas and spleen, but the doc did not even palpate these areas. Meanwhile I too lost 30 lbs unintentionally (and very quickly), am incredibly tired and weak, have pain in many places daily, and just as of last few weeks swollen left gland in neck, pain in left ear down into left cheek which has a dull ache and feels 'full'. There's no ear infection. But I am one of the lucky ones (did I say lucky?!) In that I had breast cancer well over 10 years ago. So I pulled out that card and insisted on a fine needle biopsy of the thyroid nodule and got a referral to a specialist. Then I was told I'd have to wait a month and a half just to be seen. So now I'm really feeling desperate. I called oncology office and ask them if I have my records sent from my old oncologist years ago and my latest thyroid ultrasound plus blood work from my primary Dr will they see that I get biopsy done seeing that I'm seriously ill for darn near a year and have a a cancer history. Bingo!

    All I can say is to try to be a super duper advocate for yourself and keep pressing your cause relentlessly like a lawyer presenting a case, despite your extreme weakness and pain. You know your body better than they do. Do NOT go to emergency facility unless your sure your demise is happening in minutes without drastic interventions. They love trying to get you out of there asap with a generic diagnosis of 'virus of unknown etiology' leaving you humiliated as they put it that way to insure your insurance pays them when in reality they think you are likely a 'psych' case! So there you have it. Youl don't mention ever having had a cancer, and you probably don't, but you shouldn't have to live this way. Keep us posted, I am a believer in God and I WILL be praying for you that you will get a proper diagnosis and treatment!!!)

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    • Posted

      Thank you so much for your kind words. I'm so sorry to hear that you are dealing with so much yourself. I wish I'd gotten your advise sooner on not going to the emergency room. I experienced exactly what you said. My ribs had swollen so much it looked like an alien was sticking out of my side, I was having serious pain all around my diaphragm, and having difficulty breathing. The doctor at the hospital did not do a single test, or examine me whatsoever. She told me I should go see my regular doctor. I told her that I thought one was supposed to seek emergency care when experiencing any kind of chest pain or breathing difficulties. She said I wasn't running a fever and possibly it was my gallbladder and to take some Pepcid. I couldn't believe it. I was genuinely shocked by the whole thing and left the hospital in tears. Since then, I've been having daily B12 injections as my doctor wants me to try this for a month to see if there is any improvement as a result. So far, there has not been- the fatigue has only gotten worse and I've lost another 5 lbs in less than two weeks. I can't just wait around for another month when things have been bad for so long already, so I made an appointment with an oncologist at a cancer center without the referral. I saw him on Friday, and while he also believes that the lymph nodes are of no concern and sees nothing worrisome in my tests so far, he was concerned about my symptoms, especially the weight loss. So I am grateful for that- finally a doctor who is concerned about whatever is going on. He has ordered another scan and they took 12 vials of blood to run a number of tests. I will be going to back to see him for the results in a little less than two weeks.

      Have you had your biopsy? Please tell me how things are going for you if you get a chance. I hope that the doctors are able to sort out your issues as well and that everything goes well. Again, thank you for the response. Having someone understand what I'm feeling really means a lot. That's one of the worst parts about being ill for a long time- it gets lonely, so thank you for taking the time.

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  • Posted

    Hi Mspaulson,

    I'm so thankful my post was of some comfort, yes, the aloneness of undiagnosed and therefore untreated illness has been an incredibly horrific experience for far too many desperately sick patients. I am presently trying to recover (?) From what appears to be a flu, on top of everything else. Oncology office did about face and will not schedule a biopsy for me now. I have endocrinologist appt on Oct 3 and they should authorize biopsy (if I live til then). I am too sick to say anything more presently but continue to pray for you and all on this forum who suffer so much

    Hugs,

    neverGiveUp97

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    • Posted

      Hi msPaulson!

      For me, the most suspicious thyroid nodule finally biopsied today, thank the Lord! Truly was scared to death of needles going into my neck, only local anesthesia is used ;(

      So result 4-5 days away. Meanwhile in several days there will be a re-do of a CT scan w/contrast of my pelvis and abdomen, last one was in early May I believe. But as pain/burning in left and right upper quadrant continuing and left side under bottom of left rib worsening last 2 days. That plus continued (but now slower) weight loss to this day, I just had to insist to dr area needs 2nd scan. I fear liver/pancreas pain discomfort (tumor?)primary problem, thyroid nodule only secondary. My liver showed damage last CT and my white blood counts longer than that.

      So, tough as it is when you feel like crap, you've got to be a pest to drs, I know I may well have been granted 2nd scan only due to dr's legit fear of malpractice suit if they delay longer. Any idiot knows liver or pancreas CA fast moving. And I was originally asked to wait for mid-January at first just to be seen, hell no!

      Keep plugging at it, and expect to be disliked. It's your life, not there's!

      Hugs and prayers,

      NeverGiveUp

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