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Various symptoms, not sure where to start for help

Ktwoods
Posts: 8
Joined: Jul 2016

I was diagnosed this time last summer with mono, which took months to recover from and still wonder if I'm being plagued with it. I'm also having additional symptoms that my doctor, as of yet, cannot pinpoint to a diagnosis. Ive had severe drenching night sweats for going on a year and a half, to the point I sometimes get out of bed twice per night to change every item of clothing. I have persistent base of skull pain, swollen lymph nodes, painful lower abdominal pain that includes bladder pain, as if i have a UTI but urine shows no infection. I have left rib pain and left thigh bone pain. And just in the last few days, lower right back pain and upper right back pain that seems to stem from the rib discomfort in my front torso. My question to those of you who have had a tough time finally getting a diagnosis is, do I REQUEST a specific test of my GP? I know everyone says do not google your symptoms but I'm desperate to clear my mind of the thoughts of this being some sort of cancer. Maybe it's some simple issue too, but I fear, after reading some of your experiences, that soon, someone will discover it's something bad but it will be far advanced. Some days I feel tolerable, others I'm so tired I can't think straight and often have brain fog and have been quite dizzy at times. I'm sorry to bombard all if you with my issues when so many of you are battling cancer for sure. I'm just wondering if my combination of symptoms were experienced by any of you as well, and what your diagnosis was. I dont enjoy suggesting ideas to my doctor for fear he will discount me being overly dramatic but I know, from some of you, that being proactive can save my own life!  What are your thoughts? I have no idea where to put my post, as far as a category. Thanks for reading and my prayers are with you all.  Best wishes for your healings.

Ktwoods
Posts: 8
Joined: Jul 2016

My back and rib pain is left side of my body, not right. 

po18guy
Posts: 1009
Joined: Nov 2011

Such symptoms for one year, untreated, would leave you very very sick if it was a malignancy, I think. Since we are such incredibly complicated organisms, and since viral infections, including EBV/Mononucleosis, are not well understood, I would think that a referral to an infectious disease specialist would be the place to begin. I had mono twice, and the second time it ws associated with lymphoma, but that was over 30 years later. 

Ktwoods
Posts: 8
Joined: Jul 2016

My gratitude for your reply and input. I didn't think of an infectious disease specialist. I'll see if my insurance requires a referral and then work on locating one.  Thanks again for your opinion and best of luck on your continued good health! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

I agree with Po that an Infectious Diseases doc is the most reasonable place to begin. But go somehwere soon; you have already been much more patient than most would have been.  Your pains and symptoms are so widespread as to suggest that they are not Lymphoma, certainly not all of them. But do demand progress on figuring this out, today.

max

Ktwoods
Posts: 8
Joined: Jul 2016

Thank you kindly for your reply. It's relieving to have someone say it doesn't sound like lymphoma. Maybe a I can get a diagnosis for whatever it is and be able to treat it and move on. I'm a 53 yr old female who has been physically active all my life, running, weight training and even worked as a personal trainer in my 40's. this is so unlike me and I'm itching to get my active self back. As I type this I feel a sense of guilt that I'm bugging you guys with my concerns, after all you've been through! Those of us who have never been faced with a terminal illness and  fighting to have more time, seem to take for granted so much. I'm thankful I've had good health and will look to get a satisfactory diagnosis for whatever is happening to me. Thanks for your concern and taking the time to "hear" me! I hope you are feeling great at this time and I pray for your continued healing as well as Po's. :-)

po18guy
Posts: 1009
Joined: Nov 2011

Even if it is lymphoma, it need not freak you out. For example, there are worse cancers. For that matter, there are far worse diseases that are not cancer. However, to a person who has worked hard to maintain health and fitness, the unexpected arrival of a health issue can be a shock. Part of this shock is the sudden loss of control. Age happens. Just as old cars make more noise than new ones, so also with ourselves. I am entering the tenth year of having essentially zero control over my health, yet I am loving life. Cancer has enriched it, intensified it, and has taken me places and introduced people and experiences that I would never have had otherwise. It's all a matter of perspective and what you believe.

Ktwoods
Posts: 8
Joined: Jul 2016

Yes, Po, I totally agree with you. I wouldnt say it would freak me out to get a cancer diagnosis of any type. It's the not knowing WHAT is wrong that is so frustrating. I want to figure it out, fix it and move on, even if this issue has to be controlled for a long time or if unfortunate, forever.  I have experienced a lot of loss in my life. My youngest son three summers ago to a hit and run accident, not to mention my spouse of 30 years to a long suffering that started with his heart and progressed to finally dialysis and massive stroke. I'm remarried to a rock of a man now who understands the sorrow that comes and goes. I want to be healthy for my grandchildren. I'm doing pretty good mentally lately with all that's happened in my life, and there is much more that I won't even go into. Such a long story. I think in many ways, just knowing why I'm sick and having a name for it would help me to get a fight plan in place. The freaky part for me is trying to solve this mystery.  I know what you mean too, on age stealing some control! That's really how it feels huh!  :-) I'ts an honor meeting you guys, had rather it not been under these circumstances, but you're right about that too, your health issue took you on a journey of learning and meeting others. You all do your homework on your cancer and I'm realizing that's necessary. But God puts you in the path of someone like me, who could use a little advise and even comfort, no matter what my diagnosis will be. Thank you, thank you for taking time with me! It means so much and feels good knowing someone considered my questions and made time to give your feedback! Thank you again. I'll check back here but will certainly let y'all in on what is found when I finally stop wheel spinning! Lol! Have a great evening!

po18guy
Posts: 1009
Joined: Nov 2011

Of the 68,000+ diseases and conditions that are known, there may be at least as many that are unknown. Doctors are never so pleased as when an unknown illness resolves by itself. Even some cancers spontaneously resolve, although normally they make themselves known. Before diagnosis, it is easy to hate the wait.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

As Po notes, many conditions are either never diagnosed, or almost never diagnosed. My sister-in-law- started having breathing problems and kidney issues a few years after my HL.  The first CT was assumed to be Lymphoma: huge nodes all over in the chest, and inside the lungs.   Biopsies were inconclusive. She saw numerous specialists, including a hematologist, a pulmonologist (lungs), a neurologist, and a nephrologist (kidneys).  Numerous diseases were proposed and ruled out.

It was finally diagnosed as sarcoidosis , a widespread, sometimes lifetime inflammation of the Lymphatic nodes, which usually shows primarily in the lungs.  She has serious, lifetime imparement of the lungs. There is NO CURE.  Treatment is via steroids to reduce symptoms. Sarcoidosis is non-cancerous.

Objectively, her disease is worse than Lymphoma, given that there is no possibility of cure. Some cases wane, but most never disappear, and she has acute episodes that require continuous oxygen.

I myself have had symptoms of things that no doctor could diagnosis. Seeing lightingbolts/flashes if ligts for years.  This is usually associated with retinal detachment (the retina seperating from the optic nerve), but I was checked for that, and the doctors have all said that my retinas are fine.   No doctor can say what this was, but it has ceased for about the last year, for no reason that any doctor understands.  I was blind the night of my sever auto crash in 1986, but woke up the next day with normal vision....doctors clueless.

A ffew months after I ended chemo, when my facial hair started coming back, an odd thing happened:  My facial hair would grow on one side of my face, and then stop -- no growth at all. Then it would grow on the other side of my face only for a few weeks, and then stop. This went back-and-forth for about two months.  I asked my GP, and he was clueless. I asked him if I shoul ask my oncologist, and he replied, "I wouldn't bother....he is just going to say he has no idea whatsoever."    Some time after that, normal, symmetrical beard growth returned and remained.  I occassionally have a buzzing sensation in the center of my chest, that feels exactly like a cellphone on vibrate, but without the cellphone present..... I have had massive chest trauma and a displaced sternum, but no doctor will venture any sort of guess. My EKGs are always perfectly normal.

Some stuff is unfathomable to current medicine.

max

 

Ktwoods
Posts: 8
Joined: Jul 2016

Hi again Max, 

Sorry to hear your sister-in-law has been so sick. Sounds as if she too, has had a long wait for a diagnosis. I hope at this point, since all she can do is manage her symptoms, she is at least able to make herself more comfortable now that she knows how, BECAUSE she knows what it is and has the understanding on how to help herself, cure or no cure.  I know there are illnesses that can't be explained yet and may never be, I just hope that if there's something wrong with me that CAN be identified, it happens soon. If it's a manageable disease, so be it. I just need to know the tools to MAKE it tolerable. As I'm typing this today, I feel relatively ok, aside from the bone pain, dizziness and headache. Believe it or not it's a good day compared to some I've had lately, and this is just the way it happens too..... not trying to be negative but  realistically, I can't count on tomorrow being this good. I'm tired and have been since before my mono was found. I've been told by my doctor and others that mono, attached to someone our ages, can hold on for a long time...even years!  I'm starting to believe this may be whats ailing me the whole time. I'm confused about something he told me, he said he can draw blood again and still see EBV, but that it may or may not be active again. How can we know if it's active or not if the virus itself will always show up in lab work? Will the white cells be a clue or is it something else? Maybe you know? My lymphnodes are still uncomfortable large in my neck and under my chin. Maybe I need to assume it's still EBV.. 

Anonymous user (not verified)

I am curious as to what tests your doctor ran? Did you have any type of biopsy and how are you feeling now? Also, do NOT be afraid to ask questions and ask for specific tests from your doctor!!!

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