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Just diagnosed Paraganglioma - how to treat side effects?
Neuroendocrine Tumors (NETs) | Last Active: Feb 14 1:36pm | Replies (8)Comment receiving replies
Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming.
You found a GREAT place for resources. So quick too! Well done! I am sure many, many people will be reaching out to you with similar backgrounds and wonderful help. I struggled for many, many years.
Now you have a name for it, you can go forward and get a team to help or the medics who know nothing about it will try all sorts of treatments and tests.
I am hoping you read the thread about NOT having a biopsy!
Check out all the resources for para, they also have wonderful brochures to share with your doctor and a protocol too!
I am blessed that my symptoms are once in a blue moon,( apart from hypertension, which I know is only due to stressors as I usually am hypotense.) I had to tell one radiologist, who was insisting I get a prescription for it, to just let me be for 5 minutes to get myself sorted and then recheck my blood pressure. sure enough it went to normal. Take a pill to lower it and then take a pill to raise it. LOL.
Know yourself, advocate for yourself. You KNOW your body!
All the best. I will keep you in my prayers that you receive the very best people to help you.
Replies to "Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming. You found..."
@gabulawayo Hi, thanks so much for your positive message :). I am wondering about the resources you mentioned for para - brochures to share with doctors and a protocol...do you know where I can get these? I have been with my GP for 15 years and he is great but was very quick to admit he knows only what he learnt as a resident 30 years ago! So all resources we can get would be greatly appreciated..
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Thank you for your message. I have seen the comments on biopsy and absolutely will not allow this to be done. Although to date there has been no suggestion of this. My GP (who has never seen a case of this himself before) has been great and we are lining up a couple of good options for surgery. A lot to think about but I am focused on moving forward with this and getting it out asap!
At the end of the day I am very hopeful that once that happens the side effects will resolve. Until then I think I have to just cope with the side effects as best I can.