Side Effects

[BonnieLunar]

Hi to everyone and thank you for the replies i have had, i thought i was having other problems regardless of my mpn. But i can now atleast acknowlege that mpn's have alot to answer for, i recently saw a list of side effects delving into mpnvoice. I now know that it affects us in many different ways we are all human but not quite the same, hence some of us have side affects others don't experience. It's like picking something out the hat not knowing what you've got until you take your hand out, but for it's not a happy moment it's a bad surprise. I am very grateful for all the advice especially vitamins which i do take some, i will definitely tell my gp to test me for deficiencies. I'm on three types of neuro pills and visit walton neuro hospital for botox injections, and far too many other pills that perhaps vitamins can replace. It's just crazy that my gp's don't know anything about mpn's and the effects they can have on us, i must admit i felt sorry for myself and as a grown man cried alot. It just felt as though i was being punished for some reason, but my wife always gave me the comfort i needed. My outlook has changed over the years and i try to stay positive, but well not eveyday....... I am going to ask my gp about hydrochloroquoine my spellings terrible, my muscle spasms are too regular especially neck shoulders and back. I thank you all it feels good to get this off my chest, wishing you all kindness and for better days ahead.

[saltmarsh]

I am sorry your journey has been so challenging. You are right that this disease affects many of us so differently. As many have suggested it is critical that we be our own advocate, that we do our own research and that we do NOT blindly follow most doctor's advice. For me vitamins have been a critical piece of my treatment and I'm not a pill popper. However, again, do your own research because vitamins come with their own risk if overdone. As part of the bimonthly bloodwork I get, my doctor also monitors D and B12. Good luck. Keep at it. You will hopefully find the balance that works for YOU. That's the key.

[EPguy]

Wishing you to feel better.

Your extreme neuro symptoms, which you indicated predate the HC, and consideration of Hydroxychloroquine suggest possible autoimmune condition in addition to ET. Have you seen a rheumatologist? Rheums often work with neuro Drs on autoimmune disease.

[Amethist]

please do get the book, ‘Could it be B12?’, by Sally Pacholok. It’s a very easy and informative read on B12. B12 transformed my life.

I used to work in NHS and truly believed we good get all our vitamins from our food. With modern farming and convenience food, that is no longer the case. Deficiencies occur in a subtle manner, so discreetly at first that you wouldn’t know it’s happening until it’s too late, but it does and it’s common.

On Vit D, Dr David Grimes has written excellent books.

Wishing you all the best on your journey back to health and happiness.

[George1976]

Using an artificial intelligence tool like ChatGPT might be helpful too. Enter your test results and symptoms into it and it will likely give you recommendations on possible treatments to discuss with your doctors. And I agree that rheumatology should be an integral part of your care team.