Is there an MPN Support Group in the Teesside or North East area?

[jillydabrat]

We all know the difficulties finding information or sharing our thoughts, treatments, fears with in regards to MPN so I was wondering if there was a support group in the North East? Posted my request for a buddy yesterday so eagerly awaiting a response but would love to meet up in a group. TTFN

[Mazcd Partner MPNVoice]

Hi Jilly, sorry I don't know of any support groups in that area, you could ask your haematology nurses if they know of any, or if not, if they would be interested in starting one up if there is enough interest, we have a very successful group in Nottingham, myself and the nurse running it would offer advice if needed. Maz

[Phelpsy in reply to Mazcd]

We really need a support group in North East , I'm going to suggest it at my next hospital visit thanks Maz x

[tracey13]

HI I'm from the north east,

I joined this forum for my husband who's got polycthamenia jak2 positive!

This site has been so useful to us.

Tracey

[Mazcd Partner MPNVoice in reply to tracey13]

Hi Tracey, good to hear that the site is of help, if you need any information just let me know, I can send you information booklets on PV and the different medications, just email me at [e-mail]

Maz

[tracey13 in reply to Mazcd]

Thanks maz, the booklets you sent me last year were really useful.

My husband feels a lot better since starting the hydroxy. I don't read into things as much now.

He's back to see the consultant on 15th February it's been 4 months now since my husband had a venesection as he was having them monthly.

Thanks Maz

Tracey

[JenRen0909 in reply to Mazcd]

Hello, I'm in the United States. This forum is from the UK? I'm still trying to figure out if I have this disorder or not. It's caused so much stress and anxiety. If the panel and jak2 along with a few other tests came back negative, is a bone marrow biopsy an option? I also read that there are quite a few more tests to diagnose it, in which my hematologist/oncologist seems to not be interested in doing. I'm so confused and also don't want to be diagnosed when it's too late.. please help if you can... thanks

[jillydabrat in reply to JenRen0909]

Hi Jennifer, when I was diagnosed with PV I was told I would have a blood test first to check for the jak2 deformity, if nothing showed up in the blood test then she would check via bone biopsy so I am assuming blood tests are not definitive. Could I ask why you think you have this disorder.

[JenRen0909 in reply to jillydabrat]

Hello. Well for the last 3 or 4 years my WBC keeps elevating. My yearly check up in November, it was even more elevated and then again more so in December along with hemoglobin and hematocrit. I was then referred to hematologist/oncologist. He is the one that said he thinks it's PMD or smokers Leukocytosis. After about 20 days for results he is blaming my smoking. Calling it smokers Leukocytosis and secondary erythrocytosis. I have night sweats, as of recently... terrible migraine where I have to lay down, have been lethargic for a few years, even more so now. I can't even go grocery shopping without coming home and laying down. Also as of last week, my BP and resting pulse is pretty high. The oncologist recommended me seeing a pulmonologist, even though I had a pulmonary function test same day as blood work and it was fine. So.... what's a pulmonologist going to do. I finally looked up ratings for this Dr. yesterday and they are very poor. One star.... all suggestions and help needed please! Thank you jillydabrat!

[jillydabrat in reply to JenRen0909]

Oh Jen, sounds like you have the same problem a lot of us on this site and that is you can't get your GP to listen. You could also go to the Ask a Nurse section on the MacMillan website who may be able to help you with the concerns you have. This site and the MacMillan site have been my saviours. I really hope you get the answers you are looking for and that you get someone to sit down and actually listen to what you are saying. Keep in touch as we are all going through the same battle and you will find no better support xx

[JenRen0909 in reply to jillydabrat]

Thank you very much. I definitely will keep you posted. So glad I found this MPD voice. I felt as if maybe I was losing my mind or over obsessing over my symptoms.

[JenRen0909 in reply to jillydabrat]

Thanks. Never heard of "MacMillan"...

[jillydabrat in reply to JenRen0909]

Hi Jen, MacMillan is the biggest cancer research organization in the UK I believe. If you do a search for MacMillan Cancer Care you will see their website covers every possible form of cancer and they have forums for specific "types" as well. You can get loads of information from them so please take a look x

[Mazcd Partner MPNVoice in reply to JenRen0909]

Hello JenRen0909, yes we are based in the UK. I am sorry to hear that you have been feeling so unwell, it must be very distressing for you. All I can suggest is that you speak to your haematologist/oncologist again and express your concerns and tell him/her why you think you may have a MPN, then maybe he/she can suggest some more tests for you. I hope it all gets sorted out for you. Best wishes, Maz

[JenRen0909 in reply to Mazcd]

Thank you. I'm looking for a second opinion, hopefully then I'll get some answers.

[Brendaf in reply to Mazcd]

Hi Maz I was wandering if having been diagnosed with myeloproliferative disorder unclassified as I am if we should be carrying any sort of ID card in case of any type of emergency? It does appear from this site that there are many Drs and professionals that are not aware of this unusual diagnosis.

Thanks

Brenda

[Mazcd Partner MPNVoice in reply to Brendaf]

Hi Brenda, yes it would be a good idea for you to have a card, can you send me your postal address, email me at [e-mail]

[jillydabrat in reply to tracey13]

Hi Tracey, I am on Teesside, are you close by? Would be great to meet you and your hubby for coffee and compare notes on our shared condition. Can't agree more about this site xx

Jill

[jillydabrat in reply to jillydabrat]

Hi Tracey, where is your husband's consultant and how do you find him/her?

[Chrissie2885]

Hi Jilly, I am in Darlington area and agree that a group in this area would be great.

[heathermc]

Reading this. I'm based in Cleveland. UK. If there are any groups nearby. Trying to cope with this on my own is hard. Any support is helpful. I'm having one of my low/thoughtful moods at present.

[jillydabrat in reply to heathermc]

hi heather, I am in Middlesbrough and would be more than willing to meet up for a cup of coffee and a chat if it will help?

[Hidden in reply to jillydabrat]

Looking on this site see you on here quite a while back and frim Mbro did u ever find a patient meet up group curious as I wud be interested

[jillydabrat in reply to Hidden]

Hi, sorry I only just saw your post. There is no support group but if Heather and yourself want to meet up for a coffee anytime I would be happy to meet you x