Quick question out of curiosity from this invaluable group:Does anyone have any unusual/atypical symptoms that isn't necessarily directly linked to your MPN but you think it is related?
I'll go first : I've seen three doctors, x-rays, ultrasounds, mammograms and still no explanation for a tender spot on my ribs. It feels very much like inflammation (sore to touch - visibly swollen) and it comes and goes. I swear it goes away briefly with each Pegasys shot. Then it comes back nearly weekly, perfectly timed right before I'm due for the next injection . I find it unusual the way it comes on suddenly then wanes with my MPN treatment timing. No explanation yet from anyone. It's been a year with this symptom. Convinced it's related somehow.
Just wondering if anyone else has some fun oddities like this?
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Emmyroos
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I hope you get to the bottom of what is causing it and I it would be good if someone else shares the same experience to find out what they are doing to help. There do seem to be strange oddities. I have now found difficulty getting to sleep Monday night. Peg injection is on Wednesday. Like I have a light suddenly switched on. Maybe I should leave the ironing to pile up and to it at 1 on the morning😂. Other nights are the normal, can’t stay awake on the settee stuff. Another oddity is sometimes a dull pain in right upper arm that lasts a few seconds when I start to eat, then disappears. Looking forward to reading other answers on your post and hope you get it sorted
That is an oddity! And definitely not your spleen grumbling? My spleen grumbles but does so randomly whereas it sounds like you could set a clock with your sore spot. And one of the ultrasounds would’ve surely picked up on your spleen size.
On weird side effects, I’ve had very sensitive intestines for a month now and am currently sitting on a hot water bottle to relieve some of the pain 🤪 ( it’s helping). My spleen is only 14cm so I don’t think I can blame that. Have just cancelled today’s plans in favour of the hot water bottle and sofa - what larks!
Last checked, spleen was normal size and I've been on pegasys for a year. My pain feels very surface on the rib itself. I don't know what spleen pain feels like but guessing that would feel more so internal.
Stomach issues are rough... I hope those get sorted quickly for you! Feel better!
Not on Pegasus but YES!! Left side under rib - about 2 inches tall and anywhere from 4-12 inches. Visible swelling and discomfort. My MPN dr says it is unrelated. He says it is just a lipoma- and sometimes it is irritated. We call it my angry fat. Nothing helps with the swelling or pain - time is the only thing that makes it go away. This has been happening for years.
Super interesting to hear! I'm a lipoma lady also... I've had two giant lipomas removed in recent years. My GP thought that's what it could also at one point but I didn't know it could get swollen and inflamed regularly. Your description of size and location is very much what I experience. My mass seems to grow along the rib.
Thank you for your input. Does your doc suggest removing it at any point? One of my lipomas grew so big it it was really painful and had to be removed.
He said it could be removed if it was bothering me - not sure I want to go through that. Also not sure I believe it is just a Lipoma - the size changes so dramatically- I don't think Lipomas behave that way.
I've got so many weird symptoms and haven't yet found a Dr willing to help figure them out : (
Swelling seems to get worse when I eat spicy/greasy/cruciferous foods. Have you noticed any correlation with what you eat?
If you're not sure that it's a lipoma [and they do sometimes get inflamed- usually from pressure or contact- like a from lying on the spot, or in my case, a hat rubbing on it,], you should either get it removed [excisional biopsy] or at the very least- imaged, for which an ultrasound is likely the best modality.
In fact, if you can get the U/S first, it might be helpful planning the removal.
Because sometimes, [especially the ones that swell or throb or are otherwise more than just a tiny bit symptomatic] they can be 'angio-lipomas"- meaning they have a nexus or tangle of vascular tissue [read veins and/or arteries], which can complicate a removal planned to be done in the office- by bleeding a lot.
If that fact is known in advance, having it done in an OR with all the attendant support services can make a huge difference.
On the other hand, the imaging might show that it's something else- and that could be important.
As far as the swelling and discomfort being in cycle with your Peg, probably means that there is some kind of inflammatory process involved- which the Peg suppresses.
It could even [possibly] be something like an extramedullary site of hematopoiesis
See here: Extramedullary Hematopoiesis of the Liver and Spleen
[Which, despite the title- also delineates other sites where it can occur, albeit not as commonly].
Also: Extramedullary hematopoiesis: Elucidating the function of the hematopoietic stem cell niche (Review)
Other sites
Other tissues that may be associated with EMH include the heart, fatty tissue, adrenal glands, kidney, periosteum, pleural cavity, para-vertebral regions, intra-spinal tissue, pre-sacral region, nasopharyngeal region, para-nasal sinuses (5) and numerous types of benign/malignant neoplasm (26).
Thank you so much for all this great input! I'll check it all out. Thank you for the link. I am all ears ... Will check it out!
I have seen three doctors and feel uncomfortable not knowing what exactly this is and also not getting a general consensus about it either. They all have differing opinions. And they all seem to be taking the approach of let's see if it goes away ... Which is fair.
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