Insight needed

[Ksblue]

Hi, I don't want to offend anyone by posting on here, but I would just like some help with my ongoing health. I'm 20 years old and for the last 2 years I've been going to the doctors with the same symptoms: swollen lymph nodes, hot flashes with sweating (no night sweats), fatigue and general unwell feeling. I was ignored for a while until I had blood tests done because of my hot flashes which revealed signs of infection in my blood. I was tested for everything including autoimmune, kidney and liver function. A lymph node in my neck swelled up to the point of it sticking out of my neck and an ultrasound was ordered. Confirmed a lymph node, but I was only told the rest of the results 2 weeks ago (almost a year later). I have several swollen lymph nodes deeper in my neck as well as a cyst near my thyroid. The other lymph nodes are located in my groin and just at the base of my skull. Now, I have a recent worsening shortness of breath which has been ongoing for a few months. It got so bad I had to go to the hospital and my heart rate was 130 bpm for almost 3 hours. I was given valium to check if it was anxiety, but nothing changed. Chest x ray came back clear and they have no idea what is causing this. I was also told the lymph nodes were benign from the scans, but yet again they are concerned as they don't have an idea what's causing this. The reason I'm writing on here is because they initially mentioned lymphoma, but because of the results I'm back to square one. If anyone has any insight whatsoever in my situation, even if it is "there's no possible way you could have this", please just say it. Yet again, I didn't mean to offend anyone or seem insensitive, but I cannot afford to go privately so its very difficult. Thank you

[lankisterguy]

Hi Ksblue,

I'm sorry that you are not getting prompt or thorough answers from your medical team. This is a small group for blood cancer patients in Canada - and I am a USA patient with CLL one of the many blood cancers.

I really hope that you do NOT have any blood cancer.

But to exclude that potential, I would assume that some where in your past tests the doctors have performed a test called flow cytometry.

en.wikipedia.org/wiki/Flow_...

This would normally have been done early on a blood sample and then if needed also later on a sample of tissue taken from a lymph node by a needle biopsy. This is usually the way that doctors decide whether a lymph node is benign. - I am not certain that a scan can differentiate that a node is benign without a physical tissue sample being analyzed by a pathologist.

I can only encourage you to go back to the doctors and ask to get copies of all your records and tests. And specifically ask how they determined that your lymph nodes were benign and whether a Flow Cytometry test was performed.

Then I would request a referral to an hematologist and oncologist at a major hospital so they can dig deeper into the cause of your symptoms.

I hope you get some help and relief.

Len

[Ksblue in reply to lankisterguy]

Thank you so much for you understanding and reply. I'm so sorry about about your diagnosis and I wish you recovery.

As far as I'm aware, The flow cytometry was not preformed so I will definitely be mentioning that. I've actually spoken with somebody at the university who was a medical professional and she urged me to see a hematologist, but my doctor said since there was no need for concern she wouldn't refer me. I'm planning on changing doctors or even potentially clinics to actually get somewhere. I've also been told by another doctor that I need a CT scan and a lymph node biopsy. Getting all of those tests right now is difficult due to the circumstances, but I'm not gonna let it go so easily.

Thank you again and wish you all the best.

Ksblue

[Doremefasol in reply to Ksblue]

Please change your doctor. You have to be seen by hematologist.Good luck.

[Ksblue in reply to Doremefasol]

Hi, I've just recently changed my doctor and was referred to a cardiologist by the doctor who saw me at the hospital for additional tests to rule out heart problems. They aren't concerned about my heart at all, but it's jist a precaution and to see what's behind this. As of Now, I asked for a CT scan and a hematologist, but was notified it is up to the cardiologist for additional testing. So i will make sure to mention that to them. That is for your reply!!

[Doremefasol in reply to Ksblue]

This is some kind of nonsense,I am sorry.

[Bnud]

Wow! I'm so sorry to hear about all of your medical problems. What a lot to worry about for a person of your age. You must feel desperate for help, and so far you haven't gotten any real answers that can explain your symptoms. One thing that may be reassuring is that you have be dealing with this for two years. Hopefully that means that whatever is causing this is not changing or is changing slowly. However, that doesn't mean it isn't important to get to the bottom of it. No young adult wants to live with unexplained health problems that hold them back from living their best life.

Lankisterguy gave you good advice to have a flow cytometry done, or if it was done, go over the results again with your doctor. Also, you should see a hematologist.

In the mean time, do you keep a record of your symptoms and the circumstances? It is helpful if you can tell your doctor exactly what is going on, to what extent, for how long, how often, and in what circumstances.

Keep pushing for answers, even though it is frustrating, tiring, and scary. It took almost two years of medical investigation until I finally got an answer. In my case, my condition is slow moving so earlier intervention may or may not have helped. I'm at peace with this as I believe it is part of a bigger plan for my life. My faithful Jesus has been with me every day, every step. I prayed for you today. Stay strong and please reach out whenever you want to. This is such a supportive community and we are pulling for you. Keep us posted.

By the way, feel free to contact me privately (through this website which will keep our private information confidential) if you want to and you just want someone to "listen" or to talk things over with.

[Ksblue in reply to Bnud]

I'm so grateful for you reply and understanding! I was honestly so worried about posting on here, but I'm overwhelmed by the positive responses. I totally agree with the tests that need to be preformed, it's just difficult convincing my doctors as they said there's nothing alarming. However, I'm not going to give up with it as I know I'm not fabricating my symptoms. I've also been keeping track of them for the past two years and I've even had a period of time where I didn't visit the doctor for over 6 months due to no further action. However, my symptoms are basically the same as they were, but a couple things changing.

I wish you the best and I'm so glad you're at peace with it. Thank you So, so much for everything and I'll take you up on the offer when I need it

Wish you luck and health

Ksblue

[Maltipoo]

Hi Ksblue,

I am so sorry for what you are going through. A lot of the symptoms sound similar to what my daughter went through two years ago. She developed swollen lymph nodes, exhaustion, aches all over, a squeezing feeling in her throat, back and arm. She went to over 8 doctors in a major hospital in Boston and they could not figure it out. All the symptoms sounded like an autoimmune condition but the test results did not show any specific condition. Fortunately she tried an anti inflammatory diet and she gave up all gluten and dairy products and she had relief of 80% of her symptoms. If you can get the following books at the library pick up "The Autoimmune Fix" by Dr Tom O'Bryan, and "The Autoimmune Solution" by Dr Amy Myers. The most important thing they say is to eliminate all gluten (wheat, barley, rye) and dairy. You must eliminate all forms of gluten which is included in so many products. If gluten or dairy are the triggers for your condition you hopefully will see results in as little as 3 weeks.

I pray that this helps you and that you get a full recovery from your symptoms. Please write anytime. God bless you.

[Ksblue in reply to Maltipoo]

Thank you so much for your reply and wishes. I'm sorry what your daughter went through for so long, but I'm glad everything was sorted. I wish you both the best.

I initially did also think it was something autoimmune as this is how the testing started. They thought I had secondary raynauds syndrome which was caused by something else, but autoimmune markers were clear. I've also been tested for gluten and dairy and the only thing I cannot tolerate is dairy. I've quit all of it, but my symptoms stayed pretty much the same. I follow an extremely healthy regime to try and boost my immune system and make sure I am as healthy as possible, so I am a little stuck right now with the diagnosis. I will still look at the books you recommended as everything is helpful in order to get better! I will keep updates if anything changes and thank you for your prayers and help

Ksblue

[Maltipoo in reply to Ksblue]

Thank you for your reply. If I may ask how long did you give up gluten (wheat) for and are you still gluten free? Also if I may ask what is your typical diet like?

Thank you and good health!

[Ksblue in reply to Maltipoo]

I was free from it for almost 2 years, but eventually weaned back into gluten as it was becoming expensive for me. I didn't notice any change if I'm honest, although mentally I felt healthier. I don't eat any dairy, eat a lot of brown grains, pastas and such. Lots of green vegetables like spinach and kale, ginger, garlic and such. I try to incorporate as many vegetables in my meals without overdoing it and make sure I have a balanced meal. I won't add any additional salt to season, so I might just use dairy/lactose free cheese to 'season'. Avocado, Chia seeds and flax seeds are used widely in my meals. I try not to eat too much red meat, but occasionally will.

I really hope I answered your questions well! Feel free to ask anything else

Thank you and wish you health too.

[Maltipoo in reply to Ksblue]

It sounds like you are doing a good job with your diet. In the book "The Autoimmune Fix" by Dr Tom O'Bryan, he has people eliminate sugar, gluten, and dairy for 3 weeks and if there is no improvement he has people then eliminate soy, other grains, and nightshade vegetables (eggplant, peppers, potatoes, tomatoes) as well as the original gluten, sugar, and dairy. This can be challenging especially all other grains but it is worth trying. Please get the book and check it out yourself.

A couple more questions if I might. Do you have a history of food allergies, hives, antibiotic use and or mononucleosis? My daughter had all of these.

My daughter found some relief using a rebounder which is like a mini trampoline. It seemed to get the lymph fluid moving and seemed to help with the swollen lymph nodes. Her solution was to get rid of offending foods that were triggering some sort of autoimmune response. Unfortunately the doctors were less than helpful here only offering immunosuppressive drugs. Since there tests didn't show any definite autoimmune disease they then start questioning her mental health. It took a while getting her food straight but that was the key for her. Have you kept a food dairy and noted how you feel daily? Do you ever have some days where you feel better than others? I pray for your full recovery.

Peace and Health.

[lankisterguy]

Hi Ksblue,

Your doctors may resist the CT Scans due to the cost, since your xrays and ultrasounds did not turn up any issues. And as far as I know- a CT Scan cannot diagnose any cancers whether solid or blood. So you may want to make that a lower priority until you find a justification for it, or a doctor that has a specific purpose/diagnosis for you.

-

But resisting a referral to a hematologist and having flow cytometry on your blood does not make sense. They are relatively cheap.

-

And classing your enlarged nodes as benign without a needle biopsy is also puzzling.

-

It does sound like you will be much better off with a doctor you trust and is willing to work with you instead of resisting.

-

Len

[Ksblue in reply to lankisterguy]

Hi Len,

After doing some research online, I noticed the only way to diagnose it completely is to actually preform a biopsy. It is annoying as I'm trusting in my doctors, but since there is obviously issues with my health I thought it would be easier to get a diagnosis of whatever this is.

It is strange now that you mention it as it should be a basic thing to do. I've had my bloods done so, so many times and they just say it's nothing. I guess it literally depends on the doctor because I've had some in the past who are willing to do anything to make sure it's nothing serious.

Either way, I will keep pushing and I'll mention that I've even spoken to people who know what they're talking about!

Thanks so much for your help, Ksblue

[Bnud]

FYI, my malignant lymph nodes showed first in an MRI. They are also very visible on the CTs and the ultrasound. I'm not sure about the MRI and the CT, but the ultrasound showed loss of fatty hela, which is a sign of cancer. However, the results from my CT scan 2 years said my lymph nodes were normal. I think it was just starting there at that time because a year later, all the different modes showed cancer. My oncologist also said that in hind sight, he could see something wasn't right about them at that time. Maybe a simple, painless ultrasound would shed some light on the situation. Just another idea.

[Ksblue in reply to Bnud]

Thank you for your reply and help! I actually didn't think of that at all. I mean, it crossed my mind that things could have changed since the last ultrasound I had, but getting the tests has been difficult. I'm currently waiting on an appointment with the cardiologist to rule out my heart and check for what could be causing this possibly. There's no concern for my heart at all at the moment. I think the tests I definitely need are another ultrasound and CT scan at least. I was also told I need to see a hematologist by a few People, so wish me luck lol

[Bnud in reply to Ksblue]

I'm glad you are pushing ahead. Don't get discouraged and give up. The body is very, very complicated. Sometimes doctors are careless or incompetent, but a lot of times I think that our bodies are just so wonderfully made and so incredibly complex that the human mind just can't figure everything out. One thing that helps me stay positive is to think about all the parts of my body that are working well. Be it your eyes, your muscles, your hearing, your co-ordination, whatever, spend some time focusing on what is working. Blessings today.

[curlscurls]

I wish I had medical knowledge to give you an answer. What I do know is that a 20 year old woman is more likely to get dismissed and minimized for seriously impacting symptoms. So hang in there and stay tough and keep looking for ways to get to appropriate doctors.

For cancer assessment you'd need to see an hematologist oncologist. For any oncology, it needs to be the specialists in that field. General doctors will often try to assess, but they don't have enough skills.

It may not be cancer. Do you have what's called post-exertional malaise? That's where exercise causes symptoms to increase and what looks like a crash? Do you have cognitive fog and trouble thinking? Then you might have ME/CFS. But that doesn't usually involve nodes beyond swollen at the neck.

Maybe a phone call to one of the cancer associations of america, can point you in some direction? They are no better than teaching hospitals on cancer (in spite of the name), but they are more accessible to talk to.

I'm sorry you are going through so much. Sometimes it takes time to figure out what's going on when it doesn't fit squarely into a usual pattern. You sound strong and capable!