abbyw Posted January 26, 2012 Report Share Posted January 26, 2012 Hi,I seem to have chronic swollen glands in my neck. Could this be related to my POTS symptoms? Most of the time, they don't hurt, but once in a while, I get a day where my ear and neck hurt on one side. I seem to think that the swollen glands came at around the time my POTS symptoms did. They have not gone away - it's been a little over 2 months.Thanks for the help! Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 26, 2012 Report Share Posted January 26, 2012 I get them too but think moreso related to my MCAS.it's good they hurt (in a way) because cancerous nodes are painless and we don't want that! Quote Link to comment Share on other sites More sharing options...
Sif Posted January 26, 2012 Report Share Posted January 26, 2012 I started getting swollen glands in my neck about a month ago and have been hoping it'll resolve by itself, lol. They started after I got stung by an insect (on the forehead, eep!) and haven't gone away since.. I don't know if that's related or just happened to start up the day after but I still take antihistamines just incase it is. Most of the time they don't bother me either, they'll just randomly flare up, hurt and my neck will get puffy. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 26, 2012 Report Share Posted January 26, 2012 I don't know if glands and lymph nodes are the same thing? I have several swollen lymph nodes in the my neck that have been there for years. There's one under my chin that periodically puffs up and will hurt. I've read we get these from infections. I just don't understand why they don't away when the infection clears.... unless there is a chronic infection? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 26, 2012 Report Share Posted January 26, 2012 Swollen glands/ lymph nodes are very common with all types of auto immune disorders. Mine have been chronically swollen and painful ever since I had RA. They even have swollen up in my arms before. Since it is suspected pots Is autoimmune maybe that's why your having this? Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 26, 2012 Author Report Share Posted January 26, 2012 Thanks, Julie, that's an interesting idea. I tried looking up autoimmune on wikipedia, but it was too compliacated for me How would I know if this is the source of my POTS symptoms or the swollen glands? From what I read, it is an interesting theory, my body has been through a lot of wierd things in the last year and half, and it would be nice if I could wrap it all up with one neat explanation.Right after I had a baby a ear and a half ago, I had crazy dental problems that noone could explain - the inflammation and infection spread from tooth to tooth and I ended up with 3 extractions! I went to the best specialists, and noone could explain it. Then, my IBS went crazy for around a year, and now the POTS symptoms.It all seems so unrelated, but if we could say that the inflamamtion is a AI response, would that make it all fit?On the other hand, I was sort of hoping that the swollen glands meant that I had a viral based POTS and that one day, it will just go away..... Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 26, 2012 Report Share Posted January 26, 2012 It is theorized that ibs is autoimmune so there's another connection for you. I also have ibs and it has been horrible since I had my twins 2 years ago. I would go to who ever your treating physician is and ask for an ANA test. It is a simple blood work test and it is usually positive if there is something autoimmune going on. They should also test your rheumatoid factor. Some people have a negtive ANA but autoimmune pots is still suspected. The combo of the glands and ibs really sounds AI to me and I think it would be worthwhile for you to get the ANA Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 26, 2012 Author Report Share Posted January 26, 2012 I am going to the doctor tomorrow and I will ask for an ANA test. I see that I haven't had one. If it is positive, does knowing that it is autoimmune help somehow? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 26, 2012 Report Share Posted January 26, 2012 The mono virus is also implicated in lots of post-viral POTS cases (Mayo said it's what caused mine). There are blood tests that can check for mono. Mono resides in the lymph system and causes swollen nodes Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 26, 2012 Report Share Posted January 26, 2012 I am going to the doctor tomorrow and I will ask for an ANA test. I see that I haven't had one. If it is positive, does knowing that it is autoimmune help somehow?well, the thought is that if you know it is autoimmune you can try autoimmune drugs to stop the pots. I have an extrememly high ANA that tracks with my POTS flares. When i feel good it is negative, when i'm in a flare it is positive. I have no other specific antibodies in my blood other than the anti bodies for RA. If you have a positive ANA, they will test you for more specific antibodies like lupus, sjogrens, etc. So basically the point of knowing it is autoimmune is that it will help direct the treatment. The theory is that if it is autoimmune as a cause, than an immuno suppressive drug should help. Currently I am taking Plaquenil. This is a drug that interferes with the inflammatory response your body creates during an autoimmune attack. (this drug in particular helps with lupus, sjogrens, and RA). I've been on it for 2 1/2 weeks and am already noticing some improvement. If you pots is autoimmune there are a lot of options for treatment. Good luck and let me know what you find out Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 26, 2012 Report Share Posted January 26, 2012 abby,You may want to see if your doc tomorrow will also run a panel that tests all of your immunoglobulin levels with the subclasses as it seems that you are struggling with controling infections (teeth then lymph nodes) in addition to the autoimmune tests that julie mentions. Swollen lymph nodes aren't normal. Also, if you live anywhere in the US or in a country that has Lyme infected ticks, yopu might ask to be tested for Lyme Disease too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 27, 2012 Report Share Posted January 27, 2012 This was my first symptom. Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 29, 2012 Author Report Share Posted January 29, 2012 Thanks for all of the extremely helpful information! I will ask for the tests and let you know what happens! Quote Link to comment Share on other sites More sharing options...
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