Hello - how to get message across to drs.

[Jlah]

Hi. I’m Jacquie. I was diagnosed with ET in October, Myelofibrosis in January. Had a stroke last July which led to the diagnosis. Hard to know which condition causes symptoms. Often lose colour - grey is my new blusher, and feel like blood pressure is dropping (although it isn’t). Finding it hard to explain to the doctors. Now getting some pain under ribs. Tough times as think I might have to give up work. My sisters think I need counselling. Others that it’s stress. I sort of wish they were both right as then the symptoms would go away... nb. I’m generally quite positive and cheerful even if it might not seem like it from the above. So good to find somewhere I can get some honest answers.

[Scottishterrier]

Hi jlah

i know how you feel i have had et jak2+ since 1994 have had 3 clots to the liver i have been on at my consultant about being white faced grey faced and yellow faced with blue lips he kept saying that it was the lack of sunshine but when i saw the gi registrar she told me if i ever get the yellow tinge i have to go up to my nurse and get blood test done

best wishes

Scottish Terrier xxx

[clubdino in reply to Scottishterrier]

Lack of sunshine...what a ding dong. I would have been angry. I get blue lips too on a regular basis. My coworkers point it out all the time. I even took pictures and showed them to my doctor and he still blew me off.

[Jlah in reply to clubdino]

Thanks. I will take photos to see if it gets the message across.

[Jlah in reply to Scottishterrier]

Thanks. Won’t give up. Jacquie

[fee13]

Check your blood counts as they may be low causing possible anaemia and blood may not be transporting enough oxygen around your body. A counsellor is a good idea for dealing with the anxiety of your new limitations and how to deal with ignorant/uneducated people that have no idea the effects of this chronic illness.

If the pain under your ribs is on the left hand side you should get your spleen checked to see if it has enlarged, this can be quite common. Tiredness & fatigue is also very common and a lot of people throughout the world have had to cut their hours at work or give it up entirely. That's the biggest thing people cannot relate to, fatigue is not just being tired, it is earth-shattering exhaustion with weakness and pain/aches every moment of every day (for some).

[Jlah in reply to fee13]

Thanks. Had blood tests last week. As ever all ok. As will be my blood pressure etc if I get tests. I think I need to take a film of when I turn grey so I can show my consultant/dr. I will look to get counselling. My sisters are just concerned but helpless I guess. Thanks jacquie

[Osteomyelio]

I am so sad your sisters dismiss your true Myelofibrosis issues. Yes, counseling can help the coping aspect of some chronic conditions- but it can’t cure MPN’s, Sometimes it can help to avoid people who have no tolerance for the seriousness your disease- this is difficult but a sobering fact that some people do not care to understand your pathology. This is why I find these forums helpful. We understand that most other people have no idea what you are going through physical and mentally. You may have one good day out of five days and perhaps your sisters will see you on that one good day- so they assume you were over-reacting on the days you felt horrible. Maybe your sisters would consider donating bone marrow, getting registered at a BM transplant facility. Getting them pro- active in fighting the condition will allow them to learn to be supportive of disabled people. Yes, if myelofibrosis renders you unable to work, you ARE disabled. This is a reality that happens to many of us. We care. I changed my makeup and have to make me feel better. We are here for you. Can you be referred to doctors who have more experience with MPN’s? I find they are most helpful. Some doctors don’t even know what it is. Jacquie- fight as hard as you can. Jacquie, this is your life, fight with all you’ve got!

[Jlah in reply to Osteomyelio]

Thanks I will! I think my sisters just want to think it is ok. As do I but beginning to realise I have to make life changes. I’m hoping I can get early retirement (only 47). Jacquie

[Osteomyelio in reply to Jlah]

Understood. Also, it may be helpful for your sisters to get counseling

[Cja1956]

Sorry you are having such a rough time. I agree with the others. You really should be seeing a specialist. I am Et Jak2 positive for 11 years and also diagnosed with PV 3 years ago and more recently anemia. I became very depressed a few months ago and started seeing a therapist which was very helpful. I live in Florida but I am always pale and I have had to decrease my work hours substantially. So what you are describing is normal for most of us but it’s difficult for our friends and families to really understand.

Also, you need to get that pain under your ribs checked out. Years ago I had a blood clot in my spleen and I thought I was having a heart attack because the pain was so excruciating. I was in the hospital for 3 days.

I hope you start feeling better soon.

Cindy

[Jlah in reply to Cja1956]

Thanks Cindy. I am going to seek counselling to help me manage the symptoms. Jacquie

[hunter5582]

If you have not been able to see a true MPN specialist-expert, then it is worth the effort to do so. Many docs, even hematologists, do not really know much about them as they are rare disorders. Many MPNers experience docs and others who blow off their symptoms despite how troubling they are. Here is a list of patient-recommended docs mpnforum.com/list-hem/ . There are significant secondary symptoms that many of us experience. For those of us who are JAK2+, increased levels of inflammatory cytokines can accompany the increased hematopoiesis and cause problems. There is research to back this up - one example - ncbi.nlm.nih.gov/pmc/articl... . I think that we all have to become strong advocates for ourselves to receive the quality of care we need and deserve. Educating ourselves about MPNs and finding a truly qualified doc who actually cares about what we are experiencing is very important. Hope you get your questins answered and your very real needs addressed.

[Jlah in reply to hunter5582]

Thanks. I saw Oxford uni hospital was on the list of specialists. I’m going there this week. My haematologist put me forward for a trial as my mum and nan also have jak2. There’s has not progressed to Myelofibrosis so I think they find it hard to see that mine has. Hopefully he will do an overview of my health and symptoms. Jacquie

[hunter5582 in reply to Jlah]

Glad to hear you will be able to connect with a MPN expert. Really does make a different. FYI - there is something called Familial JAK2. It is actually rare as JAK2 is usually not inherited. My daughter also is JAK2+, but we are the only two in the family we know of. All the best to you.