GOOD NEWS - Re:Bone marrow biopsy and trephine

[Hope2-Optimism]

Hi all,

Just a quick update to inform re: my results. I haven't posted for a little while as I've been waiting a few weeks to see how I was feeling following advice that my VIT D was very low. Subsequently, I was put on very high dose of Vit 3 for 3 weeks and then a maintenance dose. I am absolutely thrilled to report that the bone pain/ joint pain/ extreme fatigue and muscle weakness has improved immensely!!!

For five years I have had increased platelets ( around 460-490) consistently. Referred to haematolgy and due to symptoms advised I required bone marrow biopsy. I was told that I needed to take 75 mg aspirin daily to keep my blood thinner. I had also consistently had abcesses on my jawline for which I'd previously had antibiotics etc.

They advised that I was being treated for Essential Thronbocythemia. However, despite elevated platelets they now think that it is secondary thrombocythemia as the high platelets are linked to ongoing skin infections.

I am still going to be reviewed in Sept by haematolgy, but they feel I may well be discharged - (fingers crossed). I will be referred to skin specialist re: my ongoing skin issues and will need to continue to take aspirin.

All in all I am delighted that I feel so much better now my Vit 3 deficiency has been addressed. I'm somewhat baffled that I have been under haematolgy for over a year and under Gp services previously and had literally hundreds of blood tests and this deficiency has only recently been noted by a new Gp when I moved areas.

I don't think they generally check for Vit 3 deficiency. It's worth getting it checked as the symptoms I was experiencing obviously are very similar!!

I'd like to thank everyone for all their posts and support o this wonderful forum and for all the kind, helpful and informative posts.

Also special thanks to Maz who has been so very kind and supportive and spoken with me on the phone and allayed some of my fears and hysteria when I was waiting for results and terrified re: bone marrow biopsy.

Thanks so much to everyone and I hope and wish the best of health and future to you all.

Many Thanks Again,

Kerry xx

[Paul123456]

Pleased you are feeling better.

Many of us are low Vit D. I read on another site that it’s important to maintain your magnesium levels since this helps your body to absorb Vit D.

In addition, a doctor friend of mine who specialises in preparing patients for operations (ERAS) believes that 25% of the population are deficient in magnesium, rising to 50% for those about to have an operation. FWIW!

[Hope2-Optimism in reply to Paul123456]

Thanks Paul for your reply. It was most kind.

[mhos61]

That sounds very encouraging news!

I’m really pleased for you, it must be a huge relief. I know how anxious you were. Assuming the thrombocytosis is now presumed secondary, I suppose finding and treating the cause is the next battle.

With regards to vitamin D. I was getting repeat colds/coughs and was found to be very low in Vitamin D. I was prescribed a high dose course for three months and advised to continue with a maintenance dose afterwards. I haven’t had any colds/coughs in that seven month period. Fingers crossed!

Good Luck

Mary x🤗

[Hope2-Optimism in reply to mhos61]

Thank you so much for your reply. I feel very lucky and relieved that my Thrombocytosis is secondary. The physical improvement since taking Vit 3 has been so welcome and I can't believe how much difference it's made and such a simple fix!!!! I can now start looking forward to the arrival of my new baby grand daughter due in the next few weeks xxx I am still to be followed up by haematology in September but hopefully may be discharged. I await an appointment for skin Specialist and will go from there. I wish you well and hope things work out for you too.

Kind Regards,

Kerry xxx

[mhos61 in reply to Hope2-Optimism]

Thanks Kerry! Xx

[Mazcd Partner MPNVoice]

Hi Kerry, really pleased to hear you are feeling much better now, and that you have a better idea of what is happening to you. Also glad that speaking on the phone with you has helped, it has been lovely chatting with you. Best wishes, Maz

[Hope2-Optimism]

Thank you lovely Maz. I was so grateful for your kindness, support and reassurance. You gave me perspective when I was truly so stressed out and fearful. I wish you the very best of health too, and wish I could wave a magic wand for everyone. I will continue to dip into the forum and will take a keen interest in articles and fundraising.

Many thanks.

Hope you are able to enjoy a lovely, sunny Easter.

Very best wishes,

Kerry xxxx

[Wyebird]

Thrilled for you. Wishing you the best for the future

[Hope2-Optimism]

Thanks very much. I'm counting my blessings xxx Thank you for your kindness. The very best to you too xxx