Mpn for life

[superburning628]

Hi I have just been diagnosed with mpn. I am currently in hospital with with the shakes and cannot walk they say it's not the mpn I also am getting gaps in my legs and arms am awaiting on bone marrow to find out what stage it's at I am currently only on aspirin have been having throbbing pains in my feet and pains in hands so I no what your going throu. I have recently had a catheter fitted due to a very weak bladder yet again they say it's nothing to do with it so I no what you all going through stuart

[DougyW]

Sorry to hear you news. Many on here have been diagnosed for many years 20+ . Do not dispare and keep in touch

[hunter5582]

Sorry to hear about the multiple issues. It sounds like more than one condition is involved.

It is important to consult with a MPN Specialist regarding your situation. MPNs are rare disorders and most doctors are not experienced with them and do not know all the different ways they can manifest. MPNs can cause pain in the extremities in several different ways. You may have something else going on but it is important to understand that the body is an integrated system. MPNs do more than make too many blood cells. The deregulation of the JAK-STAT pathway also causes an overproduction of inflammatory cytokines. This can cause a host of problems.

Adding a MPN Specialist to your care team will help to ensure optimal care. Here is a list.

mpnforum.com/tsr-the-list/

Wishing you a speedy recovery and success moving forward.

[superburning628 in reply to hunter5582]

Hi thanks for your reply but I am under a haemotolgy already and awaiting a bone marrow in April

[hunter5582 in reply to superburning628]

Hopefully, your hematologist has extensive experience with MPNs. Many do not have the level of experience and expertise needed to ensure optimal care. It is worth finding out whether your current hematologist has the required level of expertise.

You will find that some of us get care directly from a MPN Specialist. Others do not have someone local so engage in a shared care arrangement. This is where a local hematologist provides ongoing care while the MPN Specialist consults periodically to ensure an optimal care plan. This is the arrangement I use. It works quite well.

We each need to define the level of expertise we require of members of our treatment team. This is the definition I use for a MPn Specialist.

1. Focus on MPNs as a primary/major focus of clinical practice.

a. Active member of a MPN Center/Clinic team

b. 100+ MPN Patients seen. (minimum of 50)

c. Understands the management of secondary/constitutional MPN symptoms

2. Knowledgeable regarding underlying mechanisms involved in MPNs.

a. molecular pathogenesis, kinase pathways, proteomics, genetics.

3. Up to date on current and emerging MPN Treatments

a. Extensive experience with managing Interferons, JAK inhibitors, and other MPN treatment options.

b. Knowledgeable about clinical trials and MPN treatments in development.

4. Active participation in MPN research

5. Presents/attends MPN forums/trainings/conferences.

6. Values a collaborative relationship with patients. Respects the patient’s ability and right to make decisions. Actively engages in shared decision making.

[superburning628 in reply to hunter5582]

Reply

[Nan14 in reply to hunter5582]

Thank you for sharing your tips to ensure you receive appropriate care from the most knowledgeable people when needed. I'm newly diagnosed and will certainly keep the above in mind for managing my condition.

[LIGEBA in reply to hunter5582]

Hunter5582 this is a great list of criteria when searching for an MPN specialist. I think even some of the MPN specialists on the lists that circulate can't check all the boxes (wish they did & the should). I wonder if an MPN specialist would welcome the opportunity to respond to each of these statements or would they get annoyed at the patient. Hoping the former, not the latter. Your approach makes so much sense and I always appreciate your insight.

[superburning628 in reply to LIGEBA]

Thanks for the reply I am finding all of the other people's advise very helpful

[Exeter21 in reply to superburning628]

Still worth an email to MPN. I also have good Haemotology however I still contacted MPN Guys hospital London for second opinion on my treatment. They were responsible in getting me onto Interferon when Haemotology gave me no choice but Hydroxy for treatment. The MPN Drs are experts whereas haemotology see all sorts of blood problems but MPN disease is rare . It needs correct diagnosis & care. The correct medication I received changed completely how I felt physically . 👌

[superburning628 in reply to Exeter21]

I will get in contact anything is worth a try while stuck in this hospital bed and on top of that been made homeless awaiting on hospital finding me somewhere

[superburning628]

Thanks for the advise

[Wyebird]

so sorry you are so unwell. You say just diagnosed. Were you diagnosed before you were admitted?

[superburning628 in reply to Wyebird]

I was diagnosed while in hospital

[Amethist]

a lot of your symptoms could be B12 deficiency too. Have they tested for this? If not ask them to test all your vits. ( B12, MMA, homocysteine, Vit D, folate, iron panel, thyroid- TSH, free T3&4, thyroid antibodies)

Hope you find some answers soon

Ps: Always get copies of all test results and keep them for comparison in the future.

NB, with B12 the test is known to be pretty useless. Even if in ‘range’, the safest way forward to is the treat the symptoms ( not a number on a bit of paper) and see if the symptoms improve. If they do then you are definitely deficient in B12. Treatment would/ should be 6 loading doses of B12 injections within 2 weeks.

[superburning628 in reply to Amethist]

Thanks for the advise