Excessive Sweats and Leg Pain

[tissi]

Husband came out of hospital being told had patellar tendonitis and no information re the hot flushes/sweats. Asked our GP to run hormone test and it shows very low testosterone. He said his counts all over the place so I was upset and rang his consultant who says the leg pain is being caused probably by fibrosis and he is going back into hospital tomorrow for tests. Five weeks ago his haematocrit was so high they did a venesection and increased the hydroxycarbomide and now they think he has changed to MF and that is what is causing the sweats even though his testosterone is very low. Can MF develop that quickly when only a short while ago his red count was very high. His platelet count is very low but he had been put on NSAIDS which they have now taken him off. Very worried and working myself up on the internet. Very confused as well as his hormone levels are so low as well. The sweats are at night but also during the day even in a cold room they just appear. Thank you to all. x

[Aime]

Hi Tissi, so sorry to hear your hubby is still having problems. I am sorry I am no medic and relatively new to PV so can't answer your questions but just wanted you to know I am thinking about you both and hope things improve very soon. Try not to read too much on net as some things are correct but you can work yourself up (I know) with incorrect info. It is only my opinion but I would be demanding answers from your husband's medics. If they can't give you proper explanations about what is happening and what is likely to happen, then I would dig in my heels and demand a second opinion. You should not be worried sick because you are not getting answers/explanations. I think one of the other forum members said for you to get a buddy - I would definitely do this as it means you can speak to someone who understands. Kindest regards Aime

[Aime]

Hi Tissi, just wondered how things were? Take care, thinking of you and hubby, Aime.x

[tissi in reply to Aime]

Thanks Aimee. Sorry not emailed yet but been up the hospital constantly. Tony has lost weight quite a few pounds in a few days but he is not really eating. He had bone marrow biopsy yesterday but his consultant thinks he now has MF, he has had PV for six years. But we have to wait on the results. Today he is having a scan on liver and spleen but that is the strange bit, his consultant does not think his spleen is that enlarged so we have to wait and see. I have cried so many tears, the ward he is on is such a bright ward but it is so humbling to see so many young people there. I miss him at home but I know he is in the right place right now.

I will email you when I have some more news. xxxxx

[tissi in reply to tissi]

hi all, my husband died on sunday night. the pv changed to acute myloid leukaemia and over three days there was nothing they could do. i am so shocked and i don't know what else to say. i just don't understand it all.

[tissi]

Hello Aimee

[Aime]

Hi Tissi, glad to hear they are doing tests and you will get to the bottom of what is happening with your hubby. He is probably not eating cos he is worried too. I know it is good he is in the right place but it is harder for you to cope so please take some comfort in knowing that people are thinking about you as well and what you are going through. Kind regards Aime xx

[tissi]

hello everyone. my husband had pv. five weeks ago we were on holiday and he was so fit and fine and his blood results were best they had been. three weeks ago he had leg pain and heavy sweats and i took him to gp, hospital et and they all said his bloods looked ok. he was admitted to hospital last saturday and a bone marrow biopsy scheduled for tuesday, results on thursday were acute leukaemia. on the weds he developed an infection and we were told on the thursday there was nothing could be done. he died on sunday night. i am so devastated. i do not understand how nbody knew based on the symptoms but the doctors said nothing shosed in the blood. only in the biopsy by which time they said it was too late to treat him. i cannot believe this has happened, i feel so lost without him and he only had pv seven years and no complications. no one has any answers for me and i don't know how to get through this, i miss him so much. i tried to get someone to listen to me.

[Aime]

Tissi, thinking of you - I am so sorry, I wish I could give you a hug - but I am sending it with this message. I think you should email Maz on the MPD website so you can maybe get help with understanding what has happened. I am no medic so can't help there - sorry but really thinking about you. So sorrrry - Aime xxx

[tissi]

Please ask maz to contact me as I can't think straight.

[rubyrubyruby]

I am so so sorry not only for your loss, but for the lack of support you seem to be getting from the hospital. What an awful time for you.

Take care.

[Aime]

Hi Tissi, I have sent an email to Maz but I know this forum is well monitored so I am sure someone will get back to you. Still thinking about you - take care Aime x

[Mazcd Partner MPNVoice in reply to Aime]

Hi Aime, thank you, I have just sent a private message to Tissi. I am so sad to hear this news, it's such a shock. Maz

[tissi in reply to Mazcd]

hi Aimee. I thought I sent Mazcd my email address but not heard from him. I am struggling and meeting with tonys consultant on Monday as nothing showed in his blood but four days before he died they said it was leukaemia but this summer was the best he had felt, I just don't understand what happened. I am at my sons house. I expected the doctor to tell me it was MF but it wasn't. x

[tissi in reply to tissi]

For Aimee

[tissi in reply to tissi]

hi aimee, not sure what I am doing right now but can you pass on [e-mail] to mazcd for me. Thank you

[Aime]

Thank you Maz. It is certainly a shock and scary news. Aime

[tissi]

For Mazcd = not sure what I am doing but my email is [e-mail]

[Mazcd Partner MPNVoice in reply to tissi]

HI Tissi, that's ok, I have your email address now, thank you. Maz

[Aime]

Hi Tissi, no problem - Maz will see it on the forum. How are you? Thinking of you, take care Aime xx

[Aime]

Tissi, sorry I should have read back the posts before I answered you. I am sure Maz will be in touch very soon. I am glad you are getting a meeting with the consultant to find out what happened. Will someone be able to go with you as maybe you will be fine, but I find it is difficult to take everything on board when you have been through such a shock. Aime xx

[Rinty]

To Tissi, I have just read your story and am absolutely devastated for you..... Our MPN's are still so mis-understood by many medics and this just inspires me to continue to raise funds for research and education.... I'm so so so sorry for your loss and hope and pray you will one day at a time start to recover.... I have ET myself and have had for 5 years, I too suffered night and day sweats, bone pain etc etc and following a recent BMB I am still in the ET category ..... No consolation what so ever for you .... But just trying to offer my experience as very similar but not the outcome ..... God Bless and will be thinking of you xxxxxx

[Aime]

Hi Tissi - if you still come on to the forum I would just like to say I'm still thinking about you. Aime xx