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Swollen Lymph Node for 10 months?
Hello,
I'm a 32 year old woman and since April of 2018, I have been feeling extremely ill with a slew of symptoms that are not normal for me personally. Also, I never know if the symptoms I'm describing are all related, but since they are not normal for me and they all started at the same time (almost overnight) I usually mention them.
My first symptoms were swollen lymph nodes on the back of my neck which subsided about 2 months after first coming on, a swollen lymph node on the right side of my neck behind my ear that grew overnight and has stayed hard, fixed, and swollen since April, difficulty breathing (a painful feeling, like when you breath in very cold air) especially on exertion although I was extremely active and fit when the symptoms started, painful joints, face/hand/knee rashes, extreme fatigue and weakness (often cannot walk up stairs, cannot hold things for more than 10 seconds, cannot carry on a conversation for more than a few minutes without feeling exhausted, etc.), lesions in my nose and on scalp, itchiness which feels deep and "un-itchable"(if that makes sense!), restless legs, drooping of right eyelid and side of mouth. One of my most troublesome symptoms is severe, painful stomach aches upon eating or drinking anything, even water. The pain in high up, right below my sternum, and feels like my stomach is full of food, even after waking up and not having eaten for 10 hours. I also had low vitamin D (14ng/mL ref. 30-100ng/mL) and hypochromic, microcytic anemia when my blood was first tested. Both of which I was put on a supplement for, but have not felt any better with these supplements. I also went on antibiotics but did not feel better.
This might not be related, but I went to an oral surgeon in December and was told I have stage V TMJ derangement (severe joint deformity with degenerative condylar changes). The oral surgeon said he thought it was from an underlying autoimmune condition or degenerative disease).
In the past two months (since December 2018), I have been having really intense night sweats, a lower back discomfort that is not quite painful but instead a deep ache that won't get better with stretching, heat, massage, etc. and that is much worse at night/when lying down. and have experienced such worsening fatigue to the extent that I often miss work and have missed over two weeks combined since December. My PCP referred me to an ENT to have a lymph node biopsy a few weeks ago (he specifically mentioned Lymphoma), but the ENT said that because my lymph node was only 9mm, she would not biopsy because there would literally be nothing that would show up because it's not active. I had read a little about the sizes of lymph nodes in prep for a possible biopsy and had seen that it might be useful in some cases to biopsy if the lymph node is under 1cm? Also, I feel like for months and months the lymph node has been much bigger, sometimes people comment how they can see it.
I have been tested for a bunch of autoimmune diseases, as that was what it was first thought to be, but none came back as being positive (Lupus, RA, Scleroderma, Celiac, IBD, Thyroid Disease, Myasthenia Gravis), as well as negative for Lyme Disease, Mono, HIV, EBV, etc.
I have had some abnormalities in my blood in addition to the nutrient deficiencies, including very low ANA (1.27, 1:80), elevated ESR and CRP, elevated platelets.
My real question is...does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything? I definitely trust that the doctors I've seen know what they're doing, but I just feel so incredibly ill that my main concern is I will be unable to work soon and not have insurance for tests or treatment and so am trying to get to the bottom of it before this happens. My PCP didn't seem concerned that the ENT didn't want to biopsy and just wants to "wait and see" how I feel, but I don't feel like I have time to wait, as each day I feel sicker and less able to go to work, doctor's appointments (let alone do literally anything I used to enjoy doing!).
Thank you so, so much for reading through this and for any advice you might be able to offer.
I'm a 32 year old woman and since April of 2018, I have been feeling extremely ill with a slew of symptoms that are not normal for me personally. Also, I never know if the symptoms I'm describing are all related, but since they are not normal for me and they all started at the same time (almost overnight) I usually mention them.
My first symptoms were swollen lymph nodes on the back of my neck which subsided about 2 months after first coming on, a swollen lymph node on the right side of my neck behind my ear that grew overnight and has stayed hard, fixed, and swollen since April, difficulty breathing (a painful feeling, like when you breath in very cold air) especially on exertion although I was extremely active and fit when the symptoms started, painful joints, face/hand/knee rashes, extreme fatigue and weakness (often cannot walk up stairs, cannot hold things for more than 10 seconds, cannot carry on a conversation for more than a few minutes without feeling exhausted, etc.), lesions in my nose and on scalp, itchiness which feels deep and "un-itchable"(if that makes sense!), restless legs, drooping of right eyelid and side of mouth. One of my most troublesome symptoms is severe, painful stomach aches upon eating or drinking anything, even water. The pain in high up, right below my sternum, and feels like my stomach is full of food, even after waking up and not having eaten for 10 hours. I also had low vitamin D (14ng/mL ref. 30-100ng/mL) and hypochromic, microcytic anemia when my blood was first tested. Both of which I was put on a supplement for, but have not felt any better with these supplements. I also went on antibiotics but did not feel better.
This might not be related, but I went to an oral surgeon in December and was told I have stage V TMJ derangement (severe joint deformity with degenerative condylar changes). The oral surgeon said he thought it was from an underlying autoimmune condition or degenerative disease).
In the past two months (since December 2018), I have been having really intense night sweats, a lower back discomfort that is not quite painful but instead a deep ache that won't get better with stretching, heat, massage, etc. and that is much worse at night/when lying down. and have experienced such worsening fatigue to the extent that I often miss work and have missed over two weeks combined since December. My PCP referred me to an ENT to have a lymph node biopsy a few weeks ago (he specifically mentioned Lymphoma), but the ENT said that because my lymph node was only 9mm, she would not biopsy because there would literally be nothing that would show up because it's not active. I had read a little about the sizes of lymph nodes in prep for a possible biopsy and had seen that it might be useful in some cases to biopsy if the lymph node is under 1cm? Also, I feel like for months and months the lymph node has been much bigger, sometimes people comment how they can see it.
I have been tested for a bunch of autoimmune diseases, as that was what it was first thought to be, but none came back as being positive (Lupus, RA, Scleroderma, Celiac, IBD, Thyroid Disease, Myasthenia Gravis), as well as negative for Lyme Disease, Mono, HIV, EBV, etc.
I have had some abnormalities in my blood in addition to the nutrient deficiencies, including very low ANA (1.27, 1:80), elevated ESR and CRP, elevated platelets.
My real question is...does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything? I definitely trust that the doctors I've seen know what they're doing, but I just feel so incredibly ill that my main concern is I will be unable to work soon and not have insurance for tests or treatment and so am trying to get to the bottom of it before this happens. My PCP didn't seem concerned that the ENT didn't want to biopsy and just wants to "wait and see" how I feel, but I don't feel like I have time to wait, as each day I feel sicker and less able to go to work, doctor's appointments (let alone do literally anything I used to enjoy doing!).
Thank you so, so much for reading through this and for any advice you might be able to offer.
COMMUNITY LEADER
Okay, first things first. To send the minimal to your pcp that he can scan through quickly:
1) WHO has clasified this condition, send only the url (and maybe the title): http://www.bloodjournal.org/content/127/20/2391.long?sso-checked=true#T9
That means that WHO says this is not just some flaky thing. Also, every doc has heard of Blood Journal, so he'll know it's not one of the tens of thousands of little med journals that he wouldn't take seriously. That's Table 9 there.
2) Next, Dr. Theoharides has an overview published in the even more prestigious NEJM, which your pcp undoubtedly subscribes to: https://www.nejm.org/doi/full/10.1056/NEJMra1409760 This shows that NEJM also says it is not just some flaky thing.
3) Then, if he wants to know the Dx procedure, also include this url: https://tmsforacure.org/overview/ which is made by MC doctors.
Yes, you should want to ultimately go to the doc you found (good work!) that advertises that they deal in MCs. But as a courtesy you of course go through your pcp first. Maybe the MC doc requires a referral anyway because they are swamped with these cases, or maybe not.
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If you feel like your head is going to explode from all this, then you're doing it right :)
1) WHO has clasified this condition, send only the url (and maybe the title): http://www.bloodjournal.org/content/127/20/2391.long?sso-checked=true#T9
That means that WHO says this is not just some flaky thing. Also, every doc has heard of Blood Journal, so he'll know it's not one of the tens of thousands of little med journals that he wouldn't take seriously. That's Table 9 there.
2) Next, Dr. Theoharides has an overview published in the even more prestigious NEJM, which your pcp undoubtedly subscribes to: https://www.nejm.org/doi/full/10.1056/NEJMra1409760 This shows that NEJM also says it is not just some flaky thing.
3) Then, if he wants to know the Dx procedure, also include this url: https://tmsforacure.org/overview/ which is made by MC doctors.
Yes, you should want to ultimately go to the doc you found (good work!) that advertises that they deal in MCs. But as a courtesy you of course go through your pcp first. Maybe the MC doc requires a referral anyway because they are swamped with these cases, or maybe not.
--------
If you feel like your head is going to explode from all this, then you're doing it right :)
1 Comments
This is all such great information! What an amazing person you are to provide all of this. I am so grateful!
I will give my PCP this information and see what he'd like to do! I'm hoping he will be receptive to it!
It is a LOT of info, but I'm so happy that you recognized something in my symptoms and have been kind enough to impart all of this knowledge on me. So, I will take the head-exploding if it means that I might be on the right track!! :)
I will give my PCP this information and see what he'd like to do! I'm hoping he will be receptive to it!
It is a LOT of info, but I'm so happy that you recognized something in my symptoms and have been kind enough to impart all of this knowledge on me. So, I will take the head-exploding if it means that I might be on the right track!! :)
COMMUNITY LEADER
Btw, when I'd said not to worry because you "don't have that", the "that" I was referring to was the version that's like a cancer.
You do have more than just the cutaneous kind, so it's systemic. (These subtypes can and probably will change in the future anyway, that shows you that it's not all set in stone.)
You do have more than just the cutaneous kind, so it's systemic. (These subtypes can and probably will change in the future anyway, that shows you that it's not all set in stone.)
1 Comments
That's a relief! And also interesting with the subtypes. When delving into some of the information on Mast Cell Diseases, it seemed like there were quite a few, and quite overwhelming!
COMMUNITY LEADER
"Is there a specific specialist that would run these tests or would it be fine for my primary care doctor to order them?"
Your pcp can and should do the screening tests. Are they open to suggestion, do you think? Or do we need to prepare an evidence based case to convince them? I believe you'll need an order that you can use to rush to get a blood draw immediately after a flushing attack.
Remember this well: I think the sample has to be sent in to a specialty lab ON ICE or it gets degraded.
Then the pcp has to know what to do with the test results.
I know that Theoharides has had a mastocytosis article published in a top journal, maybe BMJ or Lancet. That should convince any doc that this is not just some flighty thing.
There would also be a WHO classification for this. That's useful because it seems that no doc that you have seen so far is aware of mast cell diseases.
Organizations like TMS always have a list of docs that specialize, but the list is likely short.
Your pcp can and should do the screening tests. Are they open to suggestion, do you think? Or do we need to prepare an evidence based case to convince them? I believe you'll need an order that you can use to rush to get a blood draw immediately after a flushing attack.
Remember this well: I think the sample has to be sent in to a specialty lab ON ICE or it gets degraded.
Then the pcp has to know what to do with the test results.
I know that Theoharides has had a mastocytosis article published in a top journal, maybe BMJ or Lancet. That should convince any doc that this is not just some flighty thing.
There would also be a WHO classification for this. That's useful because it seems that no doc that you have seen so far is aware of mast cell diseases.
Organizations like TMS always have a list of docs that specialize, but the list is likely short.
1 Comments
I'm not quite sure my PCP is open to a lot of suggestion. He's very nice but I think after running a lot of tests, he thinks that it's just symptoms caused by a depressed mood (though I became depressed BECAUSE I have felt sick for so long!). But perhaps if I prepare some evidence and references, he would be more receptive.
I did look up if there were any doctors that treated Mast Cell Diseases near me and it appears there is an allergist/immunologist who treats them (according to his website). I don't know if I should give someone like that a shot?
Again, you have been so helpful!! Thank you, as always.
I did look up if there were any doctors that treated Mast Cell Diseases near me and it appears there is an allergist/immunologist who treats them (according to his website). I don't know if I should give someone like that a shot?
Again, you have been so helpful!! Thank you, as always.
COMMUNITY LEADER
You are welcome!
Sorry, I have to go for now, so let's talk tomorrow about which doctor. It's best to get one who knows these things by experience with relevant patients, not just any immunologist etc. If possible.
You can find an intro youtube from Dr Afrin with '101' in the title. He's a famous MC doc. The venerable grandaddy of this topic is Dr. Theoharides. You are very sharp and will pick up these things quickly.
And please let me know how things go along the process. I would really like to know, if you don't mind.
Sorry, I have to go for now, so let's talk tomorrow about which doctor. It's best to get one who knows these things by experience with relevant patients, not just any immunologist etc. If possible.
You can find an intro youtube from Dr Afrin with '101' in the title. He's a famous MC doc. The venerable grandaddy of this topic is Dr. Theoharides. You are very sharp and will pick up these things quickly.
And please let me know how things go along the process. I would really like to know, if you don't mind.
1 Comments
Thank you! I will for sure check those videos out!
I will definitely let you know! You have been such a huge help, I cannot even begin to tell you! Have a wonderful day! :)
I will definitely let you know! You have been such a huge help, I cannot even begin to tell you! Have a wonderful day! :)
COMMUNITY LEADER
"Does this fall in line with a Mastocytosis?"
Being inflammatory and reactive is consistent with all of this.
-----mastocystosis is too many MCs, which also are dysfunctional
-----MCAS is normal number of MCs, which are dysfunctional
Remember this well for the future: MCs don't show up in usual staining methods, so the pathologist HAS to be told by doc's order to look for MCs with special staining.
Being inflammatory and reactive is consistent with all of this.
-----mastocystosis is too many MCs, which also are dysfunctional
-----MCAS is normal number of MCs, which are dysfunctional
Remember this well for the future: MCs don't show up in usual staining methods, so the pathologist HAS to be told by doc's order to look for MCs with special staining.
2 Comments
Okay, that is good to remember. Thank you thank you!
Also, looking at the website for the Mastoytosis Society, many of the symptoms they list I also have, but never think to mention because they are more secondary or don't seem as prominent, like : uterine cramps or bleeding, telangiectatic lesions, bone/muscle pain, blood pressure instability, brain fog, cognitive dysfunction, tachycardia....
Also, looking at the website for the Mastoytosis Society, many of the symptoms they list I also have, but never think to mention because they are more secondary or don't seem as prominent, like : uterine cramps or bleeding, telangiectatic lesions, bone/muscle pain, blood pressure instability, brain fog, cognitive dysfunction, tachycardia....
I was just going to ask about brain fog... probably it's from immune chemicals.
There's little doubt now about what you have. Yes, TMC is a good site but then there are valuable more-edge things, too. Lots of self experimentation, also. It'll be an adventure for you :) Then you can teach your docs.
Bye for now. This was a good afternoon :)
There's little doubt now about what you have. Yes, TMC is a good site but then there are valuable more-edge things, too. Lots of self experimentation, also. It'll be an adventure for you :) Then you can teach your docs.
Bye for now. This was a good afternoon :)
COMMUNITY LEADER
Yes, there is an established procedure for testing.
After you flush, you immediately get a serum tryptase level done. Before the perishable tryptase breaks down and is gone. It even gets sent in to a specialty lab on ice.
Or in urine, methyl histamine. Maybe a skin biopsy to count MCs. Maybe a genetic test for Kit mutation.
Don't get frightened when reading about systemic mastocytosis because I don't think you have that.
Treatment is mainly various antihistamines. They block the effect of histamine, like jamming a wrong key in a lock. Also mast cell stabilizers - some of which just come from plants and can work better than drugs - to keep the MCs from going off too easily and too powerfully.
Also identifying triggers (which is not necessarily easy) and eliminating them. It's management, not cure.
Sorry to say, it won't be a quick and easy thing. But far far better than going many many more months without help and even no answer.
After you flush, you immediately get a serum tryptase level done. Before the perishable tryptase breaks down and is gone. It even gets sent in to a specialty lab on ice.
Or in urine, methyl histamine. Maybe a skin biopsy to count MCs. Maybe a genetic test for Kit mutation.
Don't get frightened when reading about systemic mastocytosis because I don't think you have that.
Treatment is mainly various antihistamines. They block the effect of histamine, like jamming a wrong key in a lock. Also mast cell stabilizers - some of which just come from plants and can work better than drugs - to keep the MCs from going off too easily and too powerfully.
Also identifying triggers (which is not necessarily easy) and eliminating them. It's management, not cure.
Sorry to say, it won't be a quick and easy thing. But far far better than going many many more months without help and even no answer.
1 Comments
Is there a specific specialist that would run these tests or would it be fine for my primary care doctor to order them?
Is the biopsy performed anywhere on the skin? I do have several scalp lesions that get "scabby" and have caused small patches of my hair to fall out.
It is far better to feel like I am on the right path, that is for sure! I am so grateful that you've suggested all of these things. I feel more hopeful than I have for months! And it is so kind of you to answer all of these questions for strangers, especially when it doesn't relate to the original topic! Thank you so so much!
Is the biopsy performed anywhere on the skin? I do have several scalp lesions that get "scabby" and have caused small patches of my hair to fall out.
It is far better to feel like I am on the right path, that is for sure! I am so grateful that you've suggested all of these things. I feel more hopeful than I have for months! And it is so kind of you to answer all of these questions for strangers, especially when it doesn't relate to the original topic! Thank you so so much!
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