Second opinion

[Skye333]

Hi I know I have written on here before about seeing another consultant for a second opinion but I am now seriously looking into it.

I was wondering if Maz would think Prof Harrison would have any suggestions as to what I can do about the fatigue and after shower itching. My Consultant just shrugged it off and said I should see my GP as if it's not connected to MF. I am trying to keep busy and as active as possible but the fatigue overtakes it and I just curl up and sink into the sofa as if I have flu.

In 2 weeks I am visiting family I haven't seen in quite a while and I dread how I will cope for full days at a time.

Do I need to email my clinic and ask them about organising a second opinion from Prof Harrison?

This site is amazing I wonder how long it has been set up and how patients with such a rare disease coped before.

Thank you

Janet

[jane13]

try your GP re the second opinion

[Skye333 in reply to jane13]

I have mentioned it to my GP but it seems they can't be bothered to even look into it it for me. They tell me my consultant should do it.

Janet

[jane13 in reply to Skye333]

not sure exactly what the rules are: vaguely think you need a reason for getting a second opinion (which you have) not sure it's an automatic right.....but sounds like passing the buck!

[catwomen2015]

Hi Janet , sure Maz will advise you more on this. all i know is regarding this awful fatigue ,is that my consultant also is of the oppinion that its not connected to MPNs and that to speak to Gp about other reasons for it! Im same as you i cannot do much in a day,and i hate late evenings out also because i feel ill day after at times .im sure we are not alone on this one .I hope you get some answers soon regards Holly

[Skye333 in reply to catwomen2015]

Thank goodness it's not just me who has normal bloods but has symptoms. I have lost count of the nights out I could have had. But this Friday is the worst, all my cat foster friends are having their belated Xmas dinner and for the first time I am not going.

Janet

[piggie50 in reply to Skye333]

Hi Skye333,

It's a shame you have to miss out. Could you manage to go if you have an afternoon sleep?

I meet some friends about once a month, I have a kip in the afternoon, we meet at 7.30 and I head for home around 10pm.

Judy

[Skye333 in reply to piggie50]

Hi Judy I so wish I could do that but as much as I feel so bad it's usually late afternoon but I don't sleep I just collapse in a quiet room. I'm out of it for most of the evening. Maybe I haven't got it quite right yet I will have to work on it before I go away.

Janet

[Aime in reply to Skye333]

Hi Guys, I had a venesection on Friday, felt dreadful fatigue before it and still struggling. When you look at any surveys of common symptoms suffered by MPN sufferers, fatigue is the most popular by far unfortunately.

I don't have a social life either, though do occasionally go out for an early evening meal and in bed by 9, late for me! Even if I rest in the afternoon when I'm not working, then I still struggle so every sympathy. I'm going back to work next Monday after knee op - 4 months post op and even although it's a phased return, I'm panicking a bit about coping because of the fatigue.

I have read information which says that the level of symptoms does not equate with blood counts but perhaps Maz can confirm.

Sorry I'm not much help but I think if you feel strongly about a second opinion you should ask for one.

Kindest regards Aime xx😺😺

Maz- could you please remind me of the names of the haematologists at Edinburgh Royal infirmary who specialise in mpns. I have turned my files upside down and can't find your email which I so carefully printed off. Thank you.xx

[cwayman11 in reply to Aime]

Good luck with your return to work Aime x

[Aime in reply to cwayman11]

Thank you. Xx Aime 😺😺

[Mazcd Partner MPNVoice in reply to Aime]

Hi Aime, I will email you. Maz x

[Aime in reply to Mazcd]

Thank you. Aime xx😺😺

[catwomen2015]

Yes i prefer lunchtime celebrations or very early eves x

[francesb]

Hi, I think your consultant haematologist needs to refer you to an mpn specialist, they should be able to find one within reasonable travelling distance for you I hope, best wishes, Frances

[jillydabrat]

Please look up the symptoms of PV and ET and show your GP that fatigue and after shower itching are classic symptoms. We have got to learn to go prepared with facts as some GP's and consultants do not have a clue regarding either illness and I am afraid it's up to us to educate them. If it's written from a reliable source they cannot dispute it. Their lack of knowledge is no excuse for lack of treatment. This site and the MacMillan Cancer site are perfect sources. When my GP shrugged my condition off I came straight home, printed everything off and went back and dropped it off at the clinic, along with info from Max and a note asking him to familiarise himself with my condition. Sorry for the rant but I have hearing about the lack of knowledge and interest from health professionals regarding this illness.

[Mazcd Partner MPNVoice]

Hi Janet, Prof Harrison has said that she thinks you might benefit from a second opinion, can you email me at [e-mail] and let me know where you live, and who you see at the moment and I will try and find out who you can see nearer to you. Prof Harrison also advised that you could print off one of our leaflets and show it to your consultant, or I can post a couple to you, you can keep one and give one to him.

We set up on this forum in 2012 and MPN Voice was set up in 2003 (we have had a couple of name changes, we started as MPD Support) and have had websites since then, our current website can be found at mpnvoice.org.uk.

Best wishes. Maz

[Nozboz]

Hi Janet I changed hospital because my consultant did not have much knowledge of Polycythemia and could not answer my questionson and pretty much shrugged it off. Sadly I wasted 6 years with him before I did my own research on Google and found a Polycythemia specialist. He took me on as a patient at the end of last year and he's done more tests in 3months than I ever had in the last 6 years. More importantly I understand more now and this site is truly amazing as are the people on it. Xx

[Skye333 in reply to Nozboz]

Hi sadly I find I'm reading more and more of this happening. I'm so glad you are finally being heard and cared for.

My consultant answered my questions but his demeaner was off putting to say the least. He looked fed up at having to answer me.

I asked him last week to write to Prof Harrison for a second opinion. If she agrees with him I'm sure it will be with a more positive attitude than the bored one I received from him.

Janet x