When to alert the doctor?

[nightshadow]

How do people determine if a new symptom is worth reporting to the doctor or if it is just business as usual?

I have been recently diagnosed with ET +JAK2 mutation and am still learning how to read what my body is telling me in the context of having ET. I have been having pain in a muscle mass, close to the surface but no bump, no bruising coming and going, but consistent to the same area. Normally I would just shrug it off, but now I don't know if I am being foolish to do so.

I am a bit gun shy of being accused of hypochondria.

[hunter5582]

We all start getting a bit hypervigilant once diagnosed. It gets better once you understand the what the reality of having a MPN will mean for you. We do experience both direct and secondary symptoms due to the JAK2 mutation. Certain direct ET symptoms like thrombosis are something that you have to monitor for. Deep vein thrombosis (DVT) is one of the risks. Secondary symptoms are also quite common. MPNs are at the core inflammatory disorders. The deregulation of the JAK-STAT pathway causes the body to make too many inflammatory cytokines. This can cause a host of problems. One thing you will hear about from other MPNers (me included) is leg cramps.

Here is a good summary of a DVT vs a leg cramp/pulled muscle. "In cases where symptoms are present, those with DVT in a leg may notice: skin which is warm to the touch in the affected area. swelling or pain in the affected calf muscle or area. The pain will usually get worse over time and does not come and go, like the feeling of a pulled muscle might."

treated.com/blog/blood-clot...

If a symptom really is bothering/worrying you it is always OK to call the office and ask. Nearly all offices have a nurse support line, This is what they are for. The nurse can let you know if something needs immediate attention. If you are in the USA, some insurance companies offer the same thing. Patient portals can also be very helpful when you have questions.

It is a really good idea to keep track of these kinds of symptoms. Let the doc know at the next appointment. Many us us experience more trouble with the constitutional and secondary symptoms of the MPN that anything else. Hopefully you are seeing a MPN Specialist rather than a regular hematologist. Docs with MPN-expertise are much more dialed in to the scope of what people with MPNs actually experience. Other docs are sometimes to quick to dismiss things as "unrelated."

Hope that helps.

[nightshadow in reply to hunter5582]

Yes, it does.

I will write down the symptoms and give them to the doctor at my next appointment. Since this is still a new thing, I am seeing her quite frequently until we see how I respond to medication and fortunately my next appointment is Monday.

I haven't asked my hematologist if she is a MPN specialist specifically, but she is working in a highly regarded cancer department of the local university. I am not worried about her skill, based on where she is working and also correlating what she has been saying and what I have seen here and in other places. I have used the patient portal and she responds personally, which is why I don't want to abuse the contact.

I just need to get a grasp of what constitutes a reason to make contact. This will come with time.

[hunter5582 in reply to nightshadow]

That sounds like a good plan.

FYI - I have two hematologists. I have a local hematologist who is a wonderful doctor, but not by his own definition a MPN Specialist. I am only his 2nd PV case in 20+ years. I also have a MPN Specialist I consult with annually (or more often if needed). The MPN-expert doc advises me and my on-going care hematologist about my MPN care plan. This approach works quite well.

All the best to you.

[Mazcd Partner MPNVoice in reply to nightshadow]

Hi Nightshadow, good that you are having a consultation with your haematologist so that you can raise this with her for her advice on what sort of symptoms you will need to contact her about and what sort of things you will need to contact your GP about. The haematology specialist nurse is also a good person to ask if you are unsure about symptoms and what to do. Best wishes, Maz

[nightshadow in reply to Mazcd]

Thanks

I talked to her today and she said that what I was worried about was not something to worry about, but she would much prefer if I told her about any concern rather than let something slip by.