Confused

[mag123ben]

I had my bloods taken for MPN jak2 . I will speak to my consultant at the hospital by phone. I never remember what to ask about. I get told my platelets are up or down. But some people on this site ask about whatever. And I'm so useless I don't know what to ask for. Sorry about the negative. That's me all the time . I'm to remember to tell the specialist that my raynairs has got worse, my big toe nails are ready to fall of again. Hands and feet tingling and are cold all the time. My fibromyalgia is through the roof. I'm so depressed. Sorry

[hunter5582]

No need to apologize. We have all been there before when things build up an become overwhelming. You have a medically complex case with multiple conditions and overlapping symptoms. Confusion is normal in this situation.

It is important to notify your MPN care team about all of the symptoms you are experiencing. An uptick in the Raynaud's symptoms (cold hands/feet) and paresthesia (tingling) are relevant to your MPN status. These symptoms are just as important to treat as the risk of thrombosis/hemorrhage. Your situation is more complex with the co-occurring fibromyalgia. You definitely need a MPN Specialist to consult on your case.

Regarding what to ask, suggest that a copy of all of your labs should be on the list. It is not enough to know that platelets are up or down. All of the numbers matter. There are labs other than your CBC that matter as well. You should have access to all of your labs and reports. [BTW-Did you ever get a copy of your DEXA scan?] Another question to ask is how to better manage the MPN-related symptoms you are experiencing. Raynaud's, paresthesia, and other symptoms can be improved with proper treatment. Note that not all providers have the expertise to manage MPN symptoms. that is why consultation with a MPN Specialist is so important.

I go to all appointments with a written agenda and give the provider a copy. This ensure I do not forget anything and helps to guide the appointment topics. Here is the format for the agenda I use.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

Wishing you all the best moving forward.

[Tattycoram in reply to hunter5582]

Thank you for that list, to take to consultations. I've made a note of it, for my own use.

[EPguy]

You describe here and prior posts various autoimmune (A-I) type conditions. You wrote "I also am suffering sjgens" Is that Sjogren's? This disease by itself can cause and explain many of your various A-I conditions. I suffer this as you can see in my posts. Scoliosis is not normally part of the Sjo spectrum however.

Are you seeing a rheumatologist? A Rheum can help manage your care. For example Plaquenil helps many Sjo patients.

As Hunter notes, your MPN Dr should discuss all treatment options with you. However one of our best options, interferon (Pegasys, Besremi) will be high risk for you with the existing A-I disease. Your MPN Dr should be made aware of your A-I history as you decide your options.

[katiewalsh]

Hi. I’m sorry to hear you have so many things going on right now. It must be overwhelming. Many of us make a list of our questions to use when talking to our doctors. And, it can help to have someone with you when you talk to the doctor. That person can take notes, and make sure you get all your questions answered. You’ve received really good advice already. It’s important that all your doctors know about your other diseases and also what symptoms etc you’re experiencing. If your depression lasts I encourage you to talk to your doctor about getting some counseling and/or medication. Good luck & please let us know how you’re doing. Take care. Katie

[Carol0925]

Hi, I find it really helpful to compile a list in preparation for my appointment. I often ask the Dr to slow down so I can make notes of the answers too. Some good advice in above answers etc. Good luck on your journey and keep in touch.