Myeloproliferative Disorders: The problems of being unusual.

I was diagnosed with Polycythaemia Vera in December of last year. I think I will identify with many of those people who say that they have been unwell off and on for years one way and another along with a multitude of irritating but not constantly debilitating symptoms.

It is so long ago that I started suffering with bleeding gums that I can't remember when it started. I know that I had a lot of dental treatment all to no avail and now at this time in my life after starting treatment with Hydroxycarbamide it is the first time in my life I have NOT had bleeding gums.

It was, as I see it, the cumulative effects over years which finally brought me to seek serious help. I began to have excruciating pain and burning in my toes and even the sheets touching them sometimes made me cry out. Of course, for most of my life I have worked full-time and you just take the good days with the bad and carry on. Everyone has an opinion of what is wrong with you and most agree it is gout and too much of the good life. So, off you go to the doctor, he tests you for gout and it comes back negative and off you go again, no further forward and anyway you didn't have too much of the good life to start with!

Without going through all the tedious symptoms. Most of us know what they are only too well, things can drag on for years until you finally get a diagnosis. It is a strange thing because you are dreading what they are going to tell you, as by this time you know yourself it is systemic and not good. When I got the diagnosis, I was not surprised. That is, I was prepared for the seriousness of it but had never heard of the condition. The prognosis was shocking to take in. But having said all that, there was an intense feeling of relief that, at last they had found out what was wrong and I was now at the start of a period in my life when I would feel better than I had for years. This has happened and although I still have trouble with my toes, I hope to get that sorted out.

The thing is though. Nobody has heard of the disorder. You tell your friends, to explain why you have not been able to see them as much. (the fatigue and trouble with walking very far makes that impossible). They have never heard of the condition. You get different responses. One friend says "Oh well, you're through it now." (you read into that "stop talking about it then, it's in the past"). You don't want to say any more. You don't want to say, "but it isn't in the past, it will always be with me and I need you to understand that I will never have the same energy to do the things we have always done". You stay quiet and just see less and less of your friends and family.

A close relative says "oh, dear, this getting old. I've been quite lucky so far, just a few aches and pains, keep me updated".

One member of the family (who has been through cancer recently) and whom I have tried to give moral support to, makes it her business to find out what the condition is and rewards me with just as much support. She has restored my faith in human kindness.

I have always been a person who "just gets on with it" and that is what I do now. Not wanting people to think I am courting sympathy stops me from explaining more about my condition and so it goes on.

I do feel, though, that more doctors need to be familiarised with the symptoms and although dentists are taught to look for mouth cancers and suchlike, they could also be made aware of the other things that can cause bleeding gums apart from dental disease and if all the dental problems have been dealt with and the bleeding continues, they could advise you to see your GP as this should be checked out. Initial red blood cell and platelet count blood tests would give warning signs to be further investigated and this could save sufferers years of undiagnosed illness.

When you ask your GP for help with some of the associated conditions, they are at a loss, as they don't know enough about the condition and of course, your haematologist is a specialist at normalising your blood and it is neither fair nor feasible to expect them to deal with other problems they are not qualified to know about. There is this, kind of, broken link.

However, I must add that having now been on my Hydroxycarbamide for nine months now and feel much better (much of the time). I am getting on with life and feeling much more normal. I am hoping the current trials for new and less toxic medications will come up trumps and give a more tolerable alternative to the Hydroxycarbamide. Who knows? A Cure could be just around the corner! We just have to believe that don't we?

[Mazcd Partner MPNVoice]

Hi CrazyDaisy

everything you have said is so true, and yes, we do have to believe a cure will come soon, we have to live in hope and keep spreading the word about MPDs. Maz

[JediReject]

Hi CrazyDaisy - All very valid especially peops not appreciating your fatigue etc and saying things like ' Im glad to see you're better now' . I just say 'oh aye i'm on top of the world' but like you I dont rise to it - ignorance is bliss. The Myeloproliferations-PMF, ET, PV are a vastly understood bunch. My mates at the club where i pop for a beer expect me to do some of the same things they do even though i txt them all a link to mpd voice and mcmillan sites to have a scan at my condition MF to aid their understanding of why I dont join in fun runs and other physical activities. But one or two seem sceptical that I have anything seriously wrong. Ho hum a tad frustrating and I'll get some stick when I tell them I wont be playing for their snooker team this winter. Keep your chin up. . I have been taking Hydrox for 6yrs and others much longer so until summat better comes along Im sure it will continue to help you. Cheerz for now I gotta go get some bread.

[tombs]

Hi CrazyDaisy. Good to read your story and it all sounds very familiar! We should all wear tee-shirts stating "I'm still ill." Because we look OK, the natural assumption is that we've come through it, somehow.

I do try to explain the condition to people - NOT for sympathy - but to try and educate others about these disorders.

[meanJ]

Hi CrazyDaisy, It was good to read your story I experience the same things. I have had PV 4 four 1/2 years. I have had pain in my toes too and 2x they tested me for gout, my hematologist said he does't know why maybe I'm getting artheritis. I tell him that I'm so tired and he said he doesn't know why. I have sausaging of the eye vessels and at times I see white or blue spots when I blink. My eye doctor is afraid that I can have a rupture in my eye and has request that my hematologist keep my levels lower. It is very frustrating because the specialist we rely on do not know all the symptoms we are experiencing.

[sphynx in reply to meanJ]

Have you considered erythromelalgia ,this causes the hand and foot pain you experience , sounds like you may benefit from a specialists advice, good luck.

Sp

[lucieboo]

Yes, it is hard. I think for other people to take the condition seriously, saying that it is a type of cancer but a slow one can be helpful. I have high uric acid level which is normally associated with gout: perhaps that is the cause of the painful toes? I've been advised to drink lots of water .I also exercise a lot, which beats the tiredness, sounds odd I know, but it definitely works for me. Regarding diagnosis, I was living in Spain, now in France, and in both countries it is routine if you go to your GP and there is no obvious diagnosis, to run a spectrum of blood tests: this picks up the condition right away. I've no idea why they don't do this in the UK

[lilyan]

I was diagnosed with MPD 2 1/2 months ago. I thought I had a stomach ache but after having a CT Scan it showed blood clots in my spleen and liver were blocking the flow of blood to my stomach. I'm on Warfarin for now. My blood tests are coming back good.

The prior summer I was having awful dizzy spells, everything would start spinning. Does that go with the MPD. I also had a vitamin B12 difficency and didn't know if that was connected to the MPD. My primary care Dr. said I was his first patient with MPD. I feel ok except for being tired and sometimes stressed. The itching after contact with water is rather painful. It's hard to describe to someone who doesn't know about MPD.

[R8afg in reply to lilyan]

Hi lilyan

I was diagnosed in February this year after a ct scan showed I too had a blood clot in my spleen, however the diagnosis only came after my 2 admission to hospital.

I have been on warfarin since then and recently (June) was also put on hydroxyurea.

Did your doctor also send you for Venesection?

[lilyan in reply to R8afg]

No I go back to my Dr. in Oct. He said if my blood count was still normal as they have been, he may put me on aspirin instead of warfarin.

Do you have itching and pain after contact with water? I have tried antistamines but t.hey aren't much help

[Michael56]

Hi CrazyDaisy

Wonderful assessment of things, people cant seem to accept that this is a form of disability with how it affects us, nice letter and positive end, well done you!!!

[Murchadhmor]

Hi there! Seems so familiar. I was diagnosed with PV in 2003 after several years of going to the doctor complaining of dizziness, blind spots, then later with pins and needles and very sore fingers and toes. Got hospitalised once or twice and counselled for stress management! They finally discovered what it was after my right hand turned blue! I had a haematocrit of 62 and am lucky to be alive. It turned into MF last year then I had my spleen out then I had a major clot which resulted in my left big toe being amputated - but people still say 'you look much better!' which in relative terms is correct but they can't see the pain in the bones and the gnawing fatigue. I have an old friend, a farmer who has serious health problems. When people tell him he looks well his reply is 'aye I'm just like an auld neep (turnip) - I look grand enough on the outside!

It's good to hear from everyone else and to know we are not alone.

[Hidden]

This could be my story too except for the bleeding gums. It's frustrating not to be able to do the same things as everyone else and even more frustrating when you see that 'not again' look on family and friends faces. I think they think you're a hypochondriac. These painful feet are torture but I find taking allopurinol eventually helped along with open toed sandals and keeping feet outside the covers at night.

[Aquaphobe]

Isn't it refreshing to realise that although we all feel as if we are alone but we are now linked by this site which helps us to see that our symptons and experiences are similar.? This has helped me so much; it has been so hard to keep up my full time job as an accountant but I am determined to do so. The hardest issue for me in recent times has been the pruritus; the temperature changes create the itching at all times of the day (humidity at present is quite difficult) No-one understands this. BUt how canthey until they experience it?

I have PV diagnosed April 2009. I am now on Pegasys Interferon ( slow release once a week)and this has its down sides but is much better than the interferon Alpha I was on previously.

As it is hard for friends and family to understand our conditions at least we can draw strength from each other.

[tornado]

Have faith & be positive.

[Michael56]

Wow, just like reading pages from my own book on life! Like you I have PV, am now on Hydrox but over the last 8 years it has been a roller coaster experience, work in particular with my last employer taking exception to my performance and hospital arrangements until a day before the tribunal they backed off and settled out of court, still leaving me to find new work. On the plus side I'm much happier in my new role and work mostly from home now, the fatigue strikes unexpectedly, I just feel tired all of a sudden and then its gone.

Seems we are all of a very similar opinion and just get on with things, hope the toes improve!

Mick x