Appointments

[Jody00]

Hi all hope all is gurd ,am still waiting on a appointment with haematologist has the one I normally see is off sick for few weeks has been to see a another haematologist for now all my test what had done few weeks ago came back normal so suggested my symptoms are related to essential thromocythaemia ,had a MRI scan on back end November still waiting on results there and also had a telephone appointment with other haematologist on 18th November still tested for essential thromocythaemia jak-2 IPSET score 2 (intermediate) refer me to neurologist with headaches and paraesthesia tinglings in hands and feet which there can go really cold compared to rest of my body and can go red to see If it a neurologist for their opinion if these are related to essential thromocythaemia then may need to consider cytoreductive treatment depending on if its a neurology or not has still waiting on appointment to come threw ,then waiting on haematologist appointment has was supposed been seen this month has said with my haematologist been off sick there are shortage of haematologist but soon as able too there will send me an appointment out which is understandable,has I can Gmail clinical nurse for any updates.

Thank-you

Best wishes xx

[hunter5582]

Glad to hear that you are doing a complete workup regarding the headaches and paresthesia. These symptoms can be directly related to the MPN or could occur for unrelated reasons.

I experience painless visual migraines as a result of a brain surgery, unrelated to the MPN. I have had great success with Ubrelvy, a CGRP inhibitor. When the source of the headaches is determined you will be able to determine an appropriate treatment plan. Note that some find relief with a higher dose of aspirin (2x/day) when the headaches are a MPN-related microvascular symptom. That would be something to discuss with a MPN Specialist if it is relevant for your situation.

Do note that some cytoreductive medication can actually cause peripheral neuropathy. If you move to cytoreduction, that would be another issue to discuss with a MPN Specialist.

Not sure why you are still waiting for the MRI results. i always get them within 24-hours. They post into patient portal automatically. I also get a copy of the MRI images on disk, usually at the same time the MRI is done. This allows me to look at the MRI myself and share the images with other providers when I need to. Suggest that you can contact the facility where the MRI was done for the results. they are most certainly already available.

All the best to you moving forward.

[Jody00 in reply to hunter5582]

Thank-you again hunter I've been on x2 aspirin since last August when updated ,still get headaches,lightheaded at times like a wozzy feeling and of course the tingling in feet and hands ,suffer quite alot with back aches and pains which now I know it's a generalised wear and tear on my spine has my clinical nurse specialist got back intouch with me yesterday the Dr haematologist who am seeing at moment will be discussing me at there MDT a week om Friday then she will arrange for me to go see them again after this . Thanks again xx

[hunter5582 in reply to Jody00]

It is definitely time for a compete assessment on what is going on. I expect some of this is MPN related and some is unrelated to the MPN directly. My own experience is that the pro-inflammatory environment the MPN creates is actually related to a host of issues we experience. Inflammation is not our friend! I also have spinal deterioration and osteoarthritis. Getting old stinks, but it beats the alternative!

The good news is that there are things that I have found that work, Curcumn does wonders for the osteoarthritis. Regular massage therapy really helps with the back pain. Ubrelvy takes care of the visual migraines. it takes a village to care for a MPN patient! I have a whole village-full of "ologists" and other providers.

Hope you get it all sorted soon. I expect you will soon have your own village of "ologists."

[Jody00 in reply to hunter5582]

Thanks on your time on replying back to me and yes I agree with the inflammation is not our friend at all , and massage therapy sounds like a gurd plan has some days my back is really bad and thank-you again xx