Posts - MPN Voice | HealthUnlocked

MPN Voice

10,437 members • 14,387 posts

All posts for October 2012

I have pv. Does anyone else suffer from very sensitive teeth? Checked by dentist and they are all ok.

Aime

•11 years ago

8 Replies

Does anyone suffer from a sensation of burning/stinging skin when not active???

130396

•11 years ago

9 Replies

Polycythaemia!!!

Just a note really, to say hello everybody...and fellow sufferers! I'm 65, retired 3 years ago & was diagnosed with PPP, in 2004; my GP thought he had seen...

Just a note really, to say hello everybody...and fellow sufferers! I'm 65, retir...

fleetpete

•12 years ago

3 Replies

Want to take advantage of all our features? Just log in!

I have just had my third venesection due to PV with about 8 weeks between the last two. Does the frequency normally settle into a pattern?

Aime

•12 years ago

9 Replies

Shingles and Depressed

Yesterday,I was diagnosed with shingles. I was taken off hydrea and put on anti -virus for a week. I am so sick and tired of being in pain that my head is...

Yesterday,I was diagnosed with shingles. I was taken off hydrea and put on anti ...

BlessedWithSix

•12 years ago

14 Replies

Myelofibrosis (JAK-2 -ve) and TIA's

Has anyone who has Myelofibrosis (JAK-2 -ve) had dealings with TIA's and how many have you had and how often. My consultant thinks I may have had a TIA. a...

Has anyone who has Myelofibrosis (JAK-2 -ve) had dealings with TIA's and how man...

dave117

•12 years ago

7 Replies

Chest X-ray (lungs) ?

I am experiencing some discomfort when I breath. I now remember being sent for a chest x-ray when I was diagnosed and was told it was to look at my lungs. Does...

I am experiencing some discomfort when I breath. I now remember being sent for a...

StreetPastor

•12 years ago

6 Replies

I hope to be offered a 2nd chance to go on the SAR trial.Have you been on one of the trails and are you able to share your experience? Ta

hackett

•12 years ago

2 Replies

Exercise?

In July joprv asked who is able to exercise ? To those who replied how are you doing now? In the last 2 years I have suffered with feet pain,pulled...

In July joprv asked who is able to exercise ? To those who replied how are you d...

ourlife

•12 years ago

6 Replies

so tired!

I'm sat in work at the moment struggling to keep my eyes open because I'm so tired! Has anyone had this conversation with a boss at work, they don't question...

I'm sat in work at the moment struggling to keep my eyes open because I'm so tir...

Jennie_Barnes

•12 years ago

17 Replies

ET and alcohol

I have ET and been on Hydroxy and aspirin for about a year now, I'm 41 and male. I find that my alcohol tolerance level has dimished, I tend to get drunk...

I have ET and been on Hydroxy and aspirin for about a year now, I'm 41 and male...

stevenjust

•12 years ago

15 Replies

The Burden of fatigue and quality of life in Myelo-proliferative disorders

http://mpninfo.org/pdfs/QualityOfLife.pdf

ETphonehome

•12 years ago

6 Replies

Has anyone made good progress or had success recently with critical illness claims?

Ginny11

•12 years ago

1 Reply

What are the signs of MF PLEASE?

I have had ET now for 16 years and been on oral chemo for 10 years. Recently been feeling weak with chills and sweats. My bones and joints start to ache around...

I have had ET now for 16 years and been on oral chemo for 10 years. Recently bee...

DENMOOR

•12 years ago

18 Replies

Charity Ball!

Hi Everyone, I just thought I would let everyone know that every year in May I host a Charity Ball in aid of CLICSargent, (cancer and leukaemia in...

Hi Everyone, I just thought I would let everyone know that every year in May ...

Jennie_Barnes

•12 years ago

9 Replies

what is the reason for not using saunas or spa treatments if you have prv please

liarose

•12 years ago

4 Replies

Pain in legs

Hi Guys, I was just wondering if anyone else suffers from a really uncomfortable dull aching pain in there legs. I've been on interferon for the last 6years...

Hi Guys, I was just wondering if anyone else suffers from a really uncomfortable...

Jennie_Barnes

•12 years ago

14 Replies

Do patients with ET have elevated C-reactive protein levels?

Brianna

•12 years ago

2 Replies

Cardiff

I recently attended the Cardiff patients forum and found it extremely helpful and informative. I have only recently been diagnosed with ET so it was great to...

I recently attended the Cardiff patients forum and found it extremely helpful an...

Irishmod

•12 years ago

7 Replies

I have one question are their other ET patients whose only treatment is Aspirin and nothing else?

Irishmod

•12 years ago

8 Replies

Anyone with MF not yet taking Hydroxy? Im over 60, other than fatigue have no symptoms. But platelets are steadily falling this year.

Wondering has anyone a clue how the disease would pan out if allowed to take its course without cytotoxic drugs?

Wondering has anyone a clue how the disease would pan out if allowed to take its...

selkie

•12 years ago

13 Replies

Successful Critical Illness Claim For PV

Just wanted to share the news I have recieved today with regards to a claim I made just over a month ago with my life insurance policy, until I found this web...

Just wanted to share the news I have recieved today with regards to a claim I ma...

littled

•12 years ago

10 Replies

How is your MPD managed and what are your experiences at the hospital/ check ups?

Hi, I was diagnosed with PV in January of this year when I was 38 weeks pregnant, my diagnosis was then changed to ET after a few months and then in the...

Hi, I was diagnosed with PV in January of this year when I was 38 weeks pregn...

Foss33

•12 years ago

23 Replies

Interferon causing hypothyroidism: Experience of taking additional thyroid medication

I have been taking interferon for ET for nearly 2 years. Recently I realised I was feeling quite unwell with a raft of poor quality of life stuff going on....

I have been taking interferon for ET for nearly 2 years. Recently I realised I w...

Florence1961

•12 years ago

2 Replies

Has anyone with ET had a medical with ATOS?

Or been to a ESA tribunal?

rhymneyich

•12 years ago

5 Replies

My tiredness

Hi iam new to this site. I have ET and suffer tirednes and headaches.I am currently taking Hydroxy Carbamide . I have also become anemic ,i dont know wether...

Hi iam new to this site. I have ET and suffer tirednes and headaches.I am curren...

westie1000

•12 years ago

6 Replies

If I will be diagnosed with ET, what is usually the first drug that they'll prescribed?

Brianna

•12 years ago

2 Replies

Itching is driving me mad!!

Hi the itching associated with pv is driving me mad at the moment. Been on different anti histamines, avoid hot water, etc. Night sweats make it worse....

Hi the itching associated with pv is driving me mad at the moment. Been on diff...

Aime

•12 years ago

8 Replies

"virtual"

I have tried to place this text into the "Questions" area but there seems to be something I have not got to grips with. When I post short question it tells me...

I have tried to place this text into the "Questions" area but there seems to be ...

Hidden

•12 years ago

1 Reply

had pain in enlarged spleen radiating to L shoulder. Has anyone else had this. I have PRV. how long did it last and what did you take

liarose

•12 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2012

I have pv. Does anyone else suffer from very sensitive teeth? Checked by dentist and they are all ok.

Does anyone suffer from a sensation of burning/stinging skin when not active???

Polycythaemia!!!

I have just had my third venesection due to PV with about 8 weeks between the last two. Does the frequency normally settle into a pattern?

Shingles and Depressed

Myelofibrosis (JAK-2 -ve) and TIA's

Chest X-ray (lungs) ?

I hope to be offered a 2nd chance to go on the SAR trial.Have you been on one of the trails and are you able to share your experience? Ta

Exercise?

so tired!

ET and alcohol

The Burden of fatigue and quality of life in Myelo-proliferative disorders

Has anyone made good progress or had success recently with critical illness claims?

What are the signs of MF PLEASE?

Charity Ball!

what is the reason for not using saunas or spa treatments if you have prv please

Pain in legs

Do patients with ET have elevated C-reactive protein levels?

Cardiff

I have one question are their other ET patients whose only treatment is Aspirin and nothing else?

Anyone with MF not yet taking Hydroxy? Im over 60, other than fatigue have no symptoms. But platelets are steadily falling this year.

Successful Critical Illness Claim For PV

How is your MPD managed and what are your experiences at the hospital/ check ups?

Interferon causing hypothyroidism: Experience of taking additional thyroid medication

Has anyone with ET had a medical with ATOS?

My tiredness

If I will be diagnosed with ET, what is usually the first drug that they'll prescribed?

Itching is driving me mad!!

"virtual"

had pain in enlarged spleen radiating to L shoulder. Has anyone else had this. I have PRV. how long did it last and what did you take

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