The bottom line is, does anybody know of, or think there may be a link between MPNs and balance?
I've not come across any direct connection myself, but I know we might be more susceptible to autoimmune conditions, some of which involve balance.
Until recently I just assumed it was me getting older. I used to cycle a lot in my teens and early twenties, moving on to a small motor cycle for a few years, then a car.
In 2010, in our late sixties, we thought we would get fitter by getting bikes. I was so disappointed to find I couldn't stay upright on mine. I kept falling off. I really tried for weeks but it didn't get any better.
My MPN wasn't diagnosed until 2019, but I do have a blood test from 2012 showing platelets at 950k.
in the intervening years I just got used to being wobbly and tripping or falling over a lot, but as time went on, my mobility got so bad with severe arthritis that the wobbling and the hobbling sort of merged together in my mind.
I have been on Peg 45 every 14 days for over a year, and don't think that made me any more unsteady.
Since I got my new hip in May, my mobility is dramatically improved but a few falls made it clear that the balance issue hasn't gone away. So long as I have just light support fromy upwalker, Wally the Walker, I can do anything and walk anywhere at a fairly normal speed. Indoors, there is always a handy wall or piece of furniture, but getting over steps through doorways is difficult. And I have to be so careful in the garden. Mostly I am just fine but I never know when my balance will just disappear and I suddenly land up in a heap. Usually just scrapes and bruises, but last month it was a broken ankle.
I have an appointment to talk to my GP about it next week, but as a precaution, they are also referring me to the Falls Prevention multi-disciplinary team right away, as there is a long way.
Sorry that I have written reams, but I shall be most grateful if anybody can shed some light on this for me.
Very many thanks, Daisy
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Hi Daisy I have often wondered if there is any connection between ET and balance but have never found anything to suggest there is. I have many trips and falls and used to think it was clumsiness on my part, maybe made worse by the arthritis my feet and ankles. I have broken a shoulder, wrist and ankle in the last 4 years. Good luck with the falls prevention team.Karen
Thanks for that Karen. It's almost easier to blame oneself but the last fall, 2 days ago, really couldn't be attributed to clumsiness or carelessness. It was a sudden loss of balance with a fleeting loss of awareness. This time no real damage. Left with a bruised coccyx and a sore shoulder. But also left me very scared.
I'm 80. I live alone and have been thoroughly enjoying growing old disgracefully. Carefully monitoring my every step, including getting an actual monitor, does not sit well with me. But it may be the only way to hang on to my freedom. xdx
"Patients with MPNs can have symptoms which interfere with their daily lives, such as tiredness, pain, sweating at night, dizziness, itching, and difficulty sleeping."
DO not expect your GP to be aware of this manifestation of MPNs. Most are not. You will liley need to educate the provider about this issue. A MPN Specialist will certainly be aware of this issue and can also educate the rest of your care team.
Thank you for the links Hunter. I'll look at them. We'll I suppose it must be part of the same thing but I really hadn't seen it that way at all. I don't feel dizzy or lightheaded, just one minute I'm fine, then suddenly I fleetingly lose awareness and then I'm not fine. Then, apart from the odd broken ankle, I'm fine again, until the next time.But indeed, when I tried searching balance, it came up with dizziness and vertigo stuff. So it's good to be on the right track.
Not to be an alarmist, but I would also consider a TIA, which can include vertigo or loss of balance or coordination. mayoclinic.org/diseases-con...
Since this symptom has resulted in injury, it does need to be taken seriously. In addition to follow-up with a MPN Specialist, I would follow up with a Neurologist.
Hello, I have during the last two years started to feel unstable and I feel that my balance is very bad. I used to love to cycle but I sadley cannot do that as I lose my balance. I got my self a balanceplate and tried to train my balance but it seems not to work. When I am walking I need to concentrate on where my feet goes, to avoid fallling. When I mentioned it to my doctor, she said she did not know if it was MF or not.
Hi Swede, thank you for your input. Yes I tried a balance board for a bit. I think it was a physiotherapist who suggested I got it as an exercise for my arthritis. I didn't get anywhere with it either.So do you plan to talk to an MPN specialist about it or do any further investigation into what is going on and what you can do about it? Could it be tied in with medication in your case?
I got myself an Upwalker to help with my mobility, both before and after my hip replacement and it's been tremendous. Mobility is fine now, 3 months post-op, but that only seems to accentuate that I still have this lack of balance so I really only feel safe and confident out walking if I continue to use the walker.
i also have issues with my balance & always have done - fall over nothing & constantly bang into things. Although I've never had a diagnosis we've always assumed I could have dyspraxia as other family members are dyslexic.
I'm seeing Prof Claire's team tomorrow and it's on my list. But it's quite a long list this time.
Possible connection between blood sugar levels and balance issues, and are balance issues the same as the dizziness which is listed as an MPN symptom?Come to think of it, I'm pretty clumsy too. Five falls in the 5 months since my hip op.
Is an MPN a "hidden disability" for a blue badge?
If we can't donate organs, will our bodies at least be of some use for research post-mortem?
Why am I MPN Unspecified? Does it matter anyway as my treatment is working? Will it affect statistics anywhere? There was an Australian video I was going to mention but can no longer remember where I saw it.
I think I have other stuff, but if I change screens I doubt I'll get this one back.
will report back if I get any useful information xdx.
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Overheating at night
ET/MPNs cause or irritate musculoskeletal issues
ILL AGAIN.
Mad Eye and Moody 
Aches and pains 
