Dr Hive - extreme swollen lymph node - Updated 3/31

[fairfarmhand]

Yay for no cancer and boo for no answers. I really hope you’re feeling better d soon.

[Soror]

I'm so annoyed on your behalf that they won't test you for autoimmune diseases . I don't understand why 😞 Fingers crossed the doctors start listening and the antibiotics work.

[cintinative]

By chance have you seen an infectious disease doctor? I wonder if it would help given what you are reporting (infections resistant to antibiotics).

I'm so sorry you are going through this. 

[Arcadia]

15 hours ago, GoVanGogh said:

Drs still don’t want to specifically test for autoimmune, which I just don’t understand. 

Is it due to insurance? We have done stuff out of pocket because our insurance requires things to be done in a certain order before they would approve subsequent stuff.

[GoVanGogh]

Four doses of new antibiotic and it is so much better! The lump is now about the size of a pea. No pain. But the lump feels much harder now that the inflammation is down. I have an ENT appt on Monday. 
 

Re: Testing for autoimmune

When I had issues previously (same? eerily similar?) the rheumatologist told me to always go to her for this, which is why I started with her this time. Rheumatologist and neurologist tag team my labs and have been testing for lupus (not sure about Sjogren’s but know neurologist ordered that the last time). Every six months, I have extensive labs. The last time was exactly five months ago. So they could have ordered new labs now, I would have thought, because it isn’t like I just had labs run. Our insurance has covered repeated labs numerous times. (Which is why we now have rheumatologist and neurologist order together and do them all in one draw.) The rheumatologist said it didn’t look like an autoimmune issues because it was just on one side, while autoimmune would involve both glands. She told me I needed to see an ENT. Then ENT told me it looked like autoimmune and I needed to see my rheumatologist. My DH is going to my appt on Monday, to see if he can advocate better for me than I am. 

[kbutton]

25 minutes ago, GoVanGogh said:

Four doses of new antibiotic and it is so much better! The lump is now about the size of a pea. No pain. But the lump feels much harder now that the inflammation is down. I have an ENT appt on Monday. 
 

Re: Testing for autoimmune

When I had issues previously (same? eerily similar?) the rheumatologist told me to always go to her for this, which is why I started with her this time. Rheumatologist and neurologist tag team my labs and have been testing for lupus (not sure about Sjogren’s but know neurologist ordered that the last time). Every six months, I have extensive labs. The last time was exactly five months ago. So they could have ordered new labs now, I would have thought, because it isn’t like I just had labs run. Our insurance has covered repeated labs numerous times. (Which is why we now have rheumatologist and neurologist order together and do them all in one draw.) The rheumatologist said it didn’t look like an autoimmune issues because it was just on one side, while autoimmune would involve both glands. She told me I needed to see an ENT. Then ENT told me it looked like autoimmune and I needed to see my rheumatologist. My DH is going to my appt on Monday, to see if he can advocate better for me than I am. 

I would tell both doctors you're going to put them in one of those large shirts for siblings that won't get along until they can give you a consensus answer. 😉🍿

[Harriet Vane]

7 minutes ago, kbutton said:

I would tell both doctors you're going to put them in one of those large shirts for siblings that won't get along until they can give you a consensus answer. 😉🍿

Seriously. Do it.

I have had such a terribly difficult time getting doctors to interact with each other and also getting them to consider how things are interconnected. For example, I have spine issues and TMJ issues. It's screamingly obvious that my posture affects my TMJ. When I tried to talk to my spine doctor about how the TMJ doctor's proposed treatment will affect my posture (specifically the angle of my neck) and therefore my bone spurs, neuropathy, and pain, he would neither consider the interaction of the TMJ appliance with my posture nor would he talk to the TMJ doctor. Good grief. Meanwhile here I am, a clueless patient who has never been to either medical or dental school, paying for multiple specialist appointments and dragging my xrays from one guy to the other, trying my best to figure out how to address my interrelated conditions without making anything worse. Sheesh. 

I'm glad you're feeling better, @GoVanGogh. I hope your team can get it together and figure this out. 

[GoVanGogh]

3 minutes ago, Harriet Vane said:

Seriously. Do it.

I have had such a terribly difficult time getting doctors to interact with each other and also getting them to consider how things are interconnected. For example, I have spine issues and TMJ issues. It's screamingly obvious that my posture affects my TMJ. When I tried to talk to my spine doctor about how the TMJ doctor's proposed treatment will affect my posture (specifically the angle of my neck) and therefore my bone spurs, neuropathy, and pain, he would neither consider the interaction of the TMJ appliance with my posture nor would he talk to the TMJ doctor. Good grief. Meanwhile here I am, a clueless patient who has never been to either medical or dental school, paying for multiple specialist appointments and dragging my xrays from one guy to the other, trying my best to figure out how to address my interrelated conditions without making anything worse. Sheesh. 

I'm glad you're feeling better, @GoVanGogh. I hope your team can get it together and figure this out. 

Oh my goodness. I feel your pain. Seriously. Feel your pain. 
I am so sorry about your health issues. As if health issues aren’t hard enough, navigating multiple doctors drives me nuts! My DS has hemiplegia, a type of cerebral palsy. When he was younger, we went to the CP clinic at a large children’s medical center. One appointment and it was one doctor right after the other. Hand orthopedic doctor worked with general orthopedic doctor who oversaw the spine and gait, neurologist worked with both. Saw all three specialists with one appointment. 

[GoVanGogh]

ENT appt went well this morning. The swelling has gone down a bit more but is still quite visible. I go back in two weeks for - hopefully - a final follow up with him. 
I would like to thank everyone. Thank you so much! I am trying so hard to heal my body and putting in all the work and had been feeling really well lately that this just really hit me hard, emotionally and physically. 

[ktgrok]

On 3/31/2023 at 6:26 PM, GoVanGogh said:

Four doses of new antibiotic and it is so much better! The lump is now about the size of a pea. No pain. But the lump feels much harder now that the inflammation is down. I have an ENT appt on Monday. 
 

Re: Testing for autoimmune

When I had issues previously (same? eerily similar?) the rheumatologist told me to always go to her for this, which is why I started with her this time. Rheumatologist and neurologist tag team my labs and have been testing for lupus (not sure about Sjogren’s but know neurologist ordered that the last time). Every six months, I have extensive labs. The last time was exactly five months ago. So they could have ordered new labs now, I would have thought, because it isn’t like I just had labs run. Our insurance has covered repeated labs numerous times. (Which is why we now have rheumatologist and neurologist order together and do them all in one draw.) The rheumatologist said it didn’t look like an autoimmune issues because it was just on one side, while autoimmune would involve both glands. She told me I needed to see an ENT. Then ENT told me it looked like autoimmune and I needed to see my rheumatologist. My DH is going to my appt on Monday, to see if he can advocate better for me than I am. 

I'm betting that given they found infection, that is why they won't look further at autoimmune right now. I would think that if it was autoimmune the biospy would have shown different results than just infection - different kinds of cells/different stuff going on with the cells, that kind of thing. Also, some autoimmune markers will be high with ANY inflammation, so would not be helpful in the middle of a crisis?

Edited April 3, 2023 by ktgrok

[Pawz4me]

10 minutes ago, ktgrok said:

I'm betting that given they found infection, that is why they won't look further at autoimmune right now. I would think that if it was autoimmune the biospy would have shown different results than just infection - different kinds of cells/different stuff going on with the cells, that kind of thing. Also, some autoimmune markers will be high with ANY inflammation, so would not be helpful in the middle of a crisis?

Inflammation markers will be high with any kind of infection, but I'm not so sure it would affect AI markers.

Edited April 3, 2023 by Pawz4me

[GoVanGogh]

50 minutes ago, ktgrok said:

I'm betting that given they found infection, that is why they won't look further at autoimmune right now. I would think that if it was autoimmune the biospy would have shown different results than just infection - different kinds of cells/different stuff going on with the cells, that kind of thing. Also, some autoimmune markers will be high with ANY inflammation, so would not be helpful in the middle of a crisis?

My former ENT (he moved out of state between my first episodes and this time) said, “Fish when you know the fish are biting,” meaning, if you are having a flare-up, test for everything possible. Rheumatologist said opposite. Never test during a flare up because everything will be off. At this point, I am traumatized and just never want to go through this ever again! LOL I am just so grateful the ENT listened to me and changed the antibiotic. He had initially said to give it two weeks. But I had been on two antibiotics and neither one helped. I am normally not one to want antibiotics, but I was so miserable. 

[ktgrok]

1 minute ago, GoVanGogh said:

My former ENT (he moved out of state between my first episodes and this time) said, “Fish when you know the fish are biting,” meaning, if you are having a flare-up, test for everything possible. Rheumatologist said opposite. Never test during a flare up because everything will be off. At this point, I am traumatized and just never want to go through this ever again! LOL I am just so grateful the ENT listened to me and changed the antibiotic. He had initially said to give it two weeks. But I had been on two antibiotics and neither one helped. I am normally not one to want antibiotics, but I was so miserable. 

yeah, it's different because when you are in the midst of something is is hard to tell if things are wonky because your immune system is fighting the already known infection, an  actual enemy or if it is doing that AND fighting your own body. If you test when no other stuff going on and it is still in battle mode you know it is autoimmune. (very simplified obviously)

But if you are looking for an infection, or a blockage, or a tumor, it is yeah, easier to see while flared up. 

That said, I'd REALLY think the biopsy would have indicated autoimmune vs infection. 

[GoVanGogh]

I had my six month rheumatology appt last week and the doctor said she wanted to go ahead and run Sjogren’s labs now, before I had a chance to ask her about it. They came back negative. So we still don’t know why the parotid gland became infected. I am still horribly scared about the chance of a recurrence, as it has been so hard to recover. I am still experiencing increased joint pain and really bad dizzy spells. I really wanted to thank everyone again for the comments and feedback. It meant a lot to me.