Acupuncture for ET side effects

[Joybard]

Hi

I was wondering whether any has had acupuncture to help with side effects for ET or other MPN.

Do any consultants recommend it?

[tessa46]

Hi joybard

I have regular acupuncture to maintain my general good health and have for many years. I have ET , diagnosed in 2016, platelets around 900. I have no ET symptoms and feel pretty well, just started Pegasys 2 weeks ago. I am 69 and had a minor stroke in 2015 which led to the diagnosis. I haven't asked but I can't see any problem with such a gentle holistic treatment. I hope you find it as helpful as I have done.

[Joybard in reply to tessa46]

Hi Tessa.

I am happy to hear this and I do believe it to be valuable. I am a Medical Acupuncturist and have been performing it on Ian my partner who has ET for the last 4 years on average every 4-6 weeks. He has just started on HU and I asked his Consultant who said no. However, he said he may be persuaded and would be interested to know what other Consultant recommend.

[beetle]

I was having acupuncture for my headaches when I was diagnosed with ET. The acupuncturist kept saying that something was going on in my body that he didn't understand! Why would he? He had never heard of ET. I can tell you that I had great faith in that man after that.

I have resorted to electro acupuncture as I cannot afford sessions all the time and I find that useful. Nobody has ever told me to avoid it!

[Joybard in reply to beetle]

Electro acupuncture - do you mean like a tens machine?

[beetle in reply to Joybard]

It is a Healthpoint machine and has a comprehensive manual with it and you find the correct acupuncture points by the different tones from the machine. I find it very effective but can be a bit painful on some points - but then so can the acupuncture needles. Just as an aside I had acupuncture during two of my labours which was brilliant. I could have made a fortune charging all the nurses/doctors who came in to see how I was doing with it! X

[Mazcd Partner MPNVoice]

Hi Joybard, this might help

mpnvoice.org.uk/living-with...

Maz

[Joybard in reply to Mazcd]

Cheers Maz. Does this mean it has the seal of approval from Prof Harrison and all Consultants.

[Mazcd Partner MPNVoice]

it means that you can have it as long as you follow the advice given and be aware that it can't cure your MPN.

[Hidden]

I had it for migraines and hormone imbalance but wasn't sure I was getting anywhere and they were selling it as a continuous treatment but sadly I can't justify or afford the money or time to be spending so much every week, am considering going back but maybe somewhere else.. I know as a therapist some things can't be fixed over night but I also don't believe I should need treatment ongoing with no end result... anyway I have had awful migraine attacks over the last weekend and still 36 days late so thinking it's a sign to go back and try again but maybe with a different Chinese Doctor. If anyone is in Surrey and has a recommendation shout! Thank you

[Joybard in reply to Hidden]

Hi Surrygirl. Normally it is a course say weekly for 6 weeks and then maybe monthly top ups depending on patient. I taught one of my ladies to perform self acupressure on acupuncture points twice daily as her husband was made redundant and she could not afford to continue coming to me. This seemed to work well for her. Acupuncture does not work for everyone some people do not respond similar to medication which may work for about 80% of people but we don't know why. You could try BMAS (British Medical Acupuncture Society) website and go to find a practitioner section.

[Hidden in reply to Joybard]

I had 7 sessions and they just kept saying you think too much, not sleep well.. er yes that why I am here, they are known in the area for being pushy and a lot of people say they never got the results they truly hoped for. My periods were early then having treatment they started to come late, now missed a whole month, as much as I did it for the migraines and I know I over think and don't sleep well etc I wanted to balance my hormones as I believed they were now linked to my cycle rather than my PV. I could try BMAS and go from there thank you

[Hidden in reply to Joybard]

I also am looking at a local place where cancer patients get reduced price treatments as even swapping with friends can be exhausting.

[Joybard in reply to Hidden]

No idea. I am based in north England. You could try cancer support groups/centres. Good luck.