Do symptoms get worse? I was originally diagnosed with PV early last year but...

[ilc72]

After having tests for JAK2 and EXON12 mutations (both negative) and a diagnosis of Secondary Erythrocytosis ruled out through extensive testing, I was recently diagnosed as having MPD Unclassified and MPN Unclassified. My bone marrow shows both a Myeloproliferative Disorder and a Myelodysplasic Disorder (Unclassified type of Leukaemia).

Over the past six months my symptoms have got progressively much worse. I can barely do the stairs without being breathless, really bad hot sweats and also very disrupted concentration/memory.

My consultant believes regular Venesection to render me Iron Deficient is the best treatment to slow the progression.

However I know my mind and body and despite regular venesections to keep HCT 0.45 and Ferritin <10 my symptoms keep getting worse and quality of life continues to deteriorate.

I don't really feel listened to and I'm getting really down, I feel the current treatment isn't working but the consultant doesn't seem to offer any other options, and in the meantime I feel life is passing me by!

I'd appreciate any feedback or thoughts of other members.

[Aime]

Hi ilc72, I have PV, jak2 neg. Some of my symptoms (fatigue in particular) is getting worse but itchy skin seems to be subsiding. Sometimes I am breathless, can hardly put one foot past the other (which I think is more frequent) and others ok. Sweats and memory are definitely getting worse. I go to Aberdeen to see my haem, but am still thinking about a second opinion, depending how the next visit goes!. If you don't feel listened to, I think you should do the same. Kind regards Aime

[Aime]

Hi again, sorry I meant to say email MPD voice and ask Maz who the best consultants are for our particular illnesses. Aime x

[LouisePRV Volunteer in reply to Aime]

Hi

Well, you might well think I'm completely bonkers but this is what I have done to combat the horrid side effects of PRV, for which I was diagnosed 4 years ago.

Last year I was also diagnosed with peripheral neuropathy and severe food allergies, following a massive prolonged course of antibiotics.

I decided the best way to help myself was through diet - we are what we eat being the basis of this thought. ( I've never been an organic food freak by the way, until then eating everything and anything)

I cut out of my diet ALL food stuffs containing chemicals additives and preservatives - this is extremely hard to do, and inconvenient, but if you can stick to it for 2 months as a trial it may well help you. I no longer consume :

Alcohol

ANY caffeine including decaff products and chocolate - Rooibos tea is fine as are fruit teas.

Oils and vinegars

Dairy produce inc soya, goat, or any milks as they are all processed.

Farmed animal products inc fish and chicken - I buy organic or line caught.

Ordinary sugar - organic is ok.

Table salt - sea salt is fine Malden or Halen Mon

It's easier to list what I do eat

Lamb

Duck

Line caught or organic fish

Organic fruit and veg. With exception of peelable stuff, but be careful with onions and potatoes.

Mornflake oats - porridge and oatcakes

If you need to know more please do me on

[e-mail] - I'll be very happy to help.

I also take plenty of exercise - walking at least an hour and a half a day.

Drink 3 litres of water per 24 hours - really REALLY important. Room temp not iced.

Since embarking on this strange " eating regime" my fatigue has improved by 80% and I can control my pruritis - I no longer shower or bathe. Quite easy once you get used to it and it's perfectly possible to stay pong free using a basin. I wash my hair over the bath.

Eating out is a nuisance and you will have to take your own food everywhere, but so worth a try.

Good luck and do contact me if you need to know more.

Our bodies are trying to fight a serious cancer. I believe that to cut out what are basically chemical poisons added to our foods gives us a better chance of doing that. My weight has also dropped from 10st 4lbs to 8 st 10lbs - I'm 5ft 5ins. This may very much have helped too.

Kind regards

Louise

[Murchadhmor]

Hi. On the same roller coaster. I succeeded in getting a referral to Dr Claire Harrison in Guys &St Thomas' in London. She is definitely the UK expert. I had an hour consultation with her and she was really helpful. Since then there is an open line from my consultant to her. If like me you live in Scotland or indeed outwith England she might be happy to see you as a private referral. Her fee was very reasonable when I saw her. All the best!

[ilc72 in reply to Murchadhmor]

I thought she didn't see private patients? Do you happen to have a contact number for her private secretary?

I'd quite happily pay and have private medical cover anyway!

Aime would you be interesting in buddying up?

[Murchadhmor in reply to ilc72]

She asked me to make a donation to an mpn charity instead. She is a star. Her secretary's number is 020 7188 2742.

[ilc72 in reply to Murchadhmor]

Thanks so much!

Out of interest how did your consultant feel about you seeing someone else?

Were they supportive?

[Murchadhmor in reply to ilc72]

It's a bit more complicated than that! I was diagnosed with PV early in 2003. In 2001 it changed to post PV MF. Not the same as MF. Anyone who says it is is plain wrong. Different beast. Spleen got huge. Got prognosis of 1-3 years. Spleen was removed. Got referred for possible transplant. Spleen removed. Got aortic clot. Resolved but big toe amputated. Then things got better. No big sweats. Saw Dr Harrison last year. She thinks giant spleen was magnifying symptoms. Also prognosis better and longer. GP and consultant totally coolmabou referral and both put a fai bit of work into organising it. Good level of professional respect. Consultant happy to talk to her as necessary. Remember everyone has a different clone and will be affected differently. Listen to your body. If you have to rest more and work less do it. Take more time or your family and friends. Most of all take charge of your life! All the best!

[Murchadhmor in reply to Murchadhmor]

Meant 2011 it changed.

[Aime in reply to ilc72]

Hi, yes definitely.

[Aime]

Hi, meant to say I did reply to your email address re buddies but no reply. Just wondered if I got address wrong. My one is [e-mail].

Regards Aime

[ilc72 in reply to Aime]

Hi Aime I have sent you an email with my contact details....

[Aime in reply to ilc72]

Hi, will get it tonight once home, still at work until about 7 pm.

[Shelly1960]

Hi only just saw your post i am also unclassified if you want to chat my email is [e-mail]