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MPN Voice
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Long time since posting last

Hi my MPN family,

It's been a long time since I last posted but so much has been happening. Firstly, my 93 year old mum, who lived with us, had a stroke. It was a little touch and go but she came through. She had to go into respite care for 6 weeks but she decided she liked the home so much that she wanted to stay. During this time my hubby also had to go into hospital for a gall bladder operation. Between running between the hospital and the home, plus looking after the house and the dogs I must admit I was knackered.

Things have now settled thank goodness. I had been a carer for my parents for over 30 years so it was quite a wrench for me, I actually felt I had lost a child.

I missed the Newcastle forum but this was way out of my control.

What I want to ask is does anybody, as part of this condition, suffer from any neurological problems. I have suddenly started to have uncontrolled movement in my hands and fingers. For example I cannot hold my hand over my computer pad without it suddenly jerking and my finger jabbing the keyboard. While doing the housework today I also had real problems lifting anything with my left hand. I was trying to dust under my perfume bottles and it was like a game of skittles every time I lifted a bottle up. I must admit I am getting a bit worried with my symptoms and I would love to hear from anybody else who has these spasms.

Thanking everyone again xx

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Hi Jilly, can so appreciate how you must have felt/feel, after looking after your parents these very many years....though must be good that your dear mother is happy where she is, and obviously has recovered somewhat from her stroke.

Re your query about neurological problems, sure it would be sensible to check it out with your GP. But, strangely enough, a couple of months ago, I was doing the same thing with my leg, i.e.involuntary movements (do have ET) and it was rather scary....and also happened with my finger (though do always have a very painful Raynaud type one, especially if it is cold)....I decided afterwards, re my leg, that it was completely the result of ....Stress! And it happened a few more times, and each time I looked back and saw I had been getting in a state about things....so that could possibly be the case with you, as you have been through so much lately. Even so, hope you will check it out with a nice understanding doctor! Best wishes, Tinkerbell

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Thank you my lovely, you are always there to help you special lady xx

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I really bless you....you are one very remarkable lady! Tinkerbell

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Hi Jilly, nice to hear from and so sorry to hear you have been going through the mill. You did so well caring for your mum as well as coping with your MPN and having your hubby in hospital too.

Now you need to think about yourself and like Tinkerbell says get this checked out by your GP. It's probably nothing to worry about but you will worry about it on top of everything else you ve been through.

Sending you a load of E hugs and thinking about you. Kindest regards Aime xx😺😺

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You must miss your mum a lot, but you do know she is safe and looked after. Like the others I think you should get yourself checked out at the doctors. Also stop dusting so much!! x

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Sorry about your mom. I lost my dad earlier this year to Alzheimer’s. I was not a full time caregiver but I did help with his care and it was hard when my days would come and I no longer had any place to go.

Sorry for sounding like a broken record on the forum lately. I have been getting b12 jabs after discovering my level was low and causing neurological symptoms. This led me to research and discover that B12 deficiency is common in MPNs. Even if serum B12 is normal or higher than normal we can be functionally deficient and unable to properly utilize B12. Low B12 can cause loads of symptoms, especially neurological ones. I would look into it.

It was my endocrinologist who discovered the problem for me. I am anxious to see what effect the jabs may have had on my blood counts when I next see the hem on Thursday. I hope only positive changes because the b12 has helped my energy levels and some of my neurological symptoms have improved.

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Hi luv, I have B12 injections every 10 weeks because of my gastric bypass. I certainly know when it's due because the symptoms of B12 deficiency are awful. Thanks for taking the time to answer though and I am really sorry about your dad x

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I can't comment on your neurological symptoms Jill - but it's so nice to see you back. I would advise that you see your GP.

Sorry to hear about your Mum and hubby too. Sounds like it taken its toll on you a bit. Hope things work out well for you.

Mary x

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Thank you for your lovely message. I am so blessed to have found such lovely people.

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