I have 3 health issues: RA, Kidney Disease (FSGS, stage 4), and I am a SCAD survivor (spontaneous coronary arterial dissection; a piece of my arterial wall of my aorta tore, blocked my LAD 90% causing a non traditional heart attack.) Lately I’ve noticed what looks like bug bites all over my calves and front of my shins. I’m pretty vain about my legs tbh, and this is distressing. They don’t itch or do anything, they just appeared and won’t go away. I’ll mention it to one of my specialists (I have 3, not including my GP). They don’t bother me pain wise they just won’t go away;it’s been over a year. I hate them but I don’t know what they are. Anyone else have red/pink dots on their lower legs? I know this makes me sound shallow but they freak me out as to what they could be. I’m stumped. TIA. 😊
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Maggieorencia
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It sounds like you have enough complexity to be an "interesting case." Wouldn't it be nice to be "boring"?
Regarding the red spots on your legs, it is hard to say. There are a number of things that meet that description including angiomas, petechiae, and various dermal allergic reactions. I experience something similar to what you describe as a side effect from Besremi, though these rashes are transient. Suggest consultation with a dermatologist is the best way to find out what is going on. You may also want to review your medications to see if any have this kid of skin reaction as a potential adverse effect. If that is the issue, then it needs to be reviewed with the prescriber. That is what I did.
The first time the Besremi rash showed up on my legs I took a picture and sent it to my hematologist. I knew what it was and she confirmed that it was a Besremi adverse effect. No big deal as it cleared up on its own. I take a daily dose of Zyrtec, which helps manage the dermal side effects.
Please do let us know what you learn and how you get on.
Thank you! I just wrote out a long reply and lost the thread! I will speak to my nephrologist who is also the chief of medicine at my hospital and she’s able to sneak me in to other departments. In Canada, referrals take 8-18 mos. So as much as I wish I was straightforward if I have to be “interesting” (they all refer to me as their special patient to the student Doctors) at least I can be seen quicker. 😊
P.S. I forgot to add that all my platelets and wbc count has been high and abnormal for a year but I’ve been too afraid to go to the hematologist/oncologist they referred me too bc I just lost my Mom to breast cancer and I know it’s irresponsible but I didn’t keep my appt. Have had some bad PTSD since her passing and then my freak SCAD plus stent and that whole week spent in the cardiac unit being the youngest patient on the ward. I have a bit of a laundry list to see to.
Sorry the hear about the loss of your mother. We lost my Mother to dementia two years ago. Dealing with that loss plus the other medical issues would be very difficult. While it is understandable that you would not want to add another issue to manage, manage it you must. Ignoring the issue will not make it go away. Rather, it could make things even more difficult. Managing a MPN on top of cardiovascular and other issues can be particularly problematic.
It sounds like you are not yet diagnosed with a MPN. There are a few things to know. Most of the time, the classic MPNs (ET, PV, MF) are caused by one of the three driver mutations (JAK2, CALR, MPL). The thrombocytosis and leukocytosis that you report could be either primary (essential) or secondary (reactive). Given the other medical issues you report, I would not make any assumptions about whether it is primary or secondary. You need a proper assessment to determine the cause of the elevated platelets and WBCs.
MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. While there is an initial assessment that any competent hematologist could do, optimal care requires consultation with a MPN Specialist. If you are diagnosed with a MPN it is worth doing whatever is necessary to consult with a MPN Specialist. Here is a list of MPN expert doctors. mpnforum.com/list-hem./
Like you, I am an "interesting case." The thing I have learned is that the negative consequences of ignoring things are too significant. I would also note that the fear of the unknown is usually far worse than dealing with the known. MPNs are manageable conditions if they care diagnosed and treated. Some of the worst consequences come from the MPN remaining undiagnosed. Please do complete the hematology assessment. Your continued success in managing your health depends on it.
Know that you will find support here on the MPN Voice forum. We have all been there. We all understand.
Thank you for googling but these marks are the same number and the same consistency and haven’t healed nor have new ones formed in over a year. They don’t hurt or itch they just take up residency on my shins and inner calves unchanged. They are a pink colour and are not raised or have a discernible pattern. I’m stumped. 🤷🏻♀️
too many potential possibilities. Things like Schaumburg’s to other serious things. I would see a dermatologist or one of your doctors and have them look at it.
Will do! Came across Schaumburg’s but dismissed it as it didn’t match however, you’re correct, the best thing to do is have them looked at. Was just trying to see if anyone else had these. Thank you! 😊
Previous to being diagnosed with PV, I was diagnosed with a type of vasculitis. I had red spots both pinpoint and larger that came and gradually disappeared. They did not hurt or itch. For a few years before these spots showed, I had recurring itchy red spots. They were never diagnosed. They stopped over a year and a half ago, but have just occurred again. They are more uncomfortable. I don’t know if MPNs have anything to do with this. I suggest you see a dermatologist and send photos to your specialists. I prefer to have a diagnosis and know what I can do from there.
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