stroke at age 39 then ET diagnosis Jak2+

[ETMum]

7 months post major stroke. I currently take HU 1g daily for 5 days then 500mg for 2 days. Also clopidogrel atorvastatin gabapentin codeine and paracetamol. I have left side paralysis and I’m learning to walk and move my arm again. I’d be interested to hear if anybody else is in the same situation. No BMB done. Monthly blood tests. Short telephone calls with Haemo doc following blood tests. Platelets fallen to 240. WBC slightly low. Bradford Royal Infirmary is hospital attended.. Should I be asking to see a specialist because of both conditions? I have to remind haemo doc of stroke each time we speak. Thanks for all the posts on this site - so informative - really helps to know I’m not alone. TIA

[hunter5582]

Sorry to hear you have had such a rough go of it. It sounds like you are a survivor and will prevail over adversity.

To answer your question, you should definitely see a MPN Specialist. MPNs are rare conditions and most hematologists do not have the KSAs to provide optimal care. Given the complexity of your case and list of medications you are using, it is particular important to have a MPN Specialist involved in your care. Medically complex cases require expert input from multiple providers to direct a proper care plan. The significant interactions between the medications you need and the impact of multiple medical conditions requires a high level of expert collaboration. You need and deserve optimal care.

Here is a list of MPN expert docs. mpnforum.com/list-hem./

All the best moving forward.

[ETMum in reply to hunter5582]

Thank you Hunter for your support. It really helps to have talk with people who are engaged. Im going to speak with hospital and ask for a referral.

[katiewalsh]

Hi. Welcome to our group. I’m sorry to hear about your major stroke. Many of us are diagnosed after a blood clot (or clots) have brought us close to death. For me it was both lungs full of blood clots & I was unable to breathe. In answer to your question whether you need an MPN specialist, YES!! I can’t stress this enough. Time after time patients on here report getting less than optimal care because they don’t have specialists. It’s essential for many reasons. I’m afraid I can’t answer the second part of your question. Except for your doctor not to at least familiarize himself with your record to know about your stroke before meetings seems shameful. Once you get an MPN specialist you’ll feel much better emotionally & stronger. Post with any questions you have. Take care. Katie

[ETMum in reply to katiewalsh]

Thank you Katie. I didnt realise that other people had traumatic starts to their MPN diagnosis. I thought everyone was diagnosed before an event and that I was the exception who had missed the indicators! Im glad you got through the lung clots and hope your mpn is under control. I will contact hospital and ask for referral to a specialist. I feel more confident following advice from the group than asking for a referral on the basis that I feel a bit side-lined by my current doctors. Thank you for your support.

[Heidi-W]

Really sorry to hear you had such a devastating stroke at such a young age. Sounds like you are very brave and I really hope you continue to see improvement with your mobility on that left side.

With regards to specialists it would def be worth considering in view of young age and potential option for other treatments like interferon etc in the future. I think Conniesdad replied last month to a post about MPN specialist and seemed to recommend the team at Royal Hallamshire in Sheffield, so it might be worth exploring that. Hopefully some others can advise you on other Yorkshire specialists or there is Prof Somervaille and his team at Christies in Manchester who I'm under with my post PV MF.

Good luck with everything

Heidi

[ETMum in reply to Heidi-W]

Thank you Heidi for your reply. Yep, nothing else for it but to keep battling on 😆. I don't know if being exhausted all the time is from the hydroxy or the stroke and if ET is limiting the stroke recovery. I worry that at 240 my platelets are too low and monitoring has now been changed to two monthly and question if Haemo has taken my stroke into consideration. Healthy blood would perhaps afford me the energy to continue my stroke recovery. It would be good to get some answers. So, following advice from the group, I will be asking for a referral. Thank you for your suggestions. I will post my progress. It's good to talk!

[Heidi-W]

Ah I'm glad you are going to ask about an MPN specialist referral. Platelets at 240 usually fine-normal range is about 150-400 in UK . Think the exhaustion will be combo of the stroke the ET and potentially the hydroxy. Often with MPN even if your blood counts are okay you can still feel shattered which is somewhat annoying. Be kind to yourself as sounds like you are doing amazingly well so far. Recovery from many medical things more prolonged in our conditions- it took me longer than expected after hip surgery to get the energy levels back up.

I'd def try and get to one of MPN forums in the future when you're well enough as its so nice to meet others in your position and share stories. It can be quite a lonely diagnosis especially when you are young and your friends don't get why you are tired and can't do what you used to. I went to my first one last week at Chester and it was so lovely to meet the faces behind the names on here.

Anyway good luck and keep in touch.

Heidi x