I wish I could thank you personally, but I'll shout it from the roof top here. I don't know what year you and your husband posted "What I Wish I had Known Sooner," but I thank you for your advice. It really spoke to me. I, along with most of us here, have suffered the long, lonely, frustrating journey of trying to be heard...of trying to understand what is happening... all the while, keeping your head up & believing yourself...that you're not crazy...
So I've adopted your advice & made it my personal motto for the year(s) ahead. I was just telling friends the other day, and they too want to adopt "my motto." So with your permission, let us all take a positive step forward, take a calming breath and simply say to ourself, "If the doctor in front of you cannot answer your questions, get in front of one that can."
Cheers to a new year, and many thanks! Please keep up the great work you're doing all the while taking care of yourselves first and foremost!
Your friend,
AllHis
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AllHis
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What a nice letter. Thank you. Rosemary mostly works behind the scenes, but I do feel that I owe her my life because she made certain that we made the lifestyle changes we needed to. If anyone is interested in the article that this refers to, here is a link
Thank you so much for your kind words. It IS a long, lonely, frustrating journey and If I've helped you in any small way, it makes my heart happy. Rosemary
I have just read everything and it will be a huge help to me.
I saw my consultant yesterday, said nothing I can do right now unless you go worse!! Said bloods ok to which I replied can't your bloods be ok and your liver not, he didn't answer that one!! He's sending me to some pain Dr at wythenshaw hospital who inserts electrodes. He said see you in a year!! I said if I go worse , he interrupted phone my secretary, I replied oh don't you worry I will!! She's brilliant!! The thing is he's not seen me doubled up in pain in a and e or elsewhere. You all take care and thank you once again Lynne xxxx
I was just thinking of you. It's been a long road, but I'm SLOWLY putting pieces together & getting my "team" together.
I saw a vascular specialist in Cleveland, OH this week & she reviewed all my questions with me. When she asked who do you want me to send my report to? Well, I wasn't prepared. I've spent the last two days rescheduling with past doctors who had dismissed me with an anxiety disorder, fibromyalgia, or IBS...
Dr. Gornik was appalled that no one had seriously evaluated my neck. She saw things on the imaging I gave her, I guess. I simply told her doctor after doctor kept reassuring me I was fine.
GET ANOTHER DOCTOR, A NEUROLOGIST OR ENT.
So.
It's a rare (yet Dr Gornik believes "under diagnosed") blood vessel disease where the vessel walls themselves bulge and narrow creating a "beading" on imaging. I'm prone to aneurisms & tears.
OK.
Well, she found this narrowing in 5 key places. (She let my husband hear one of the buits in my neck.) Both carotids, both main arteries to my legs and my right kidney all could be heard as a bruit with her stethoscope. I have more testing next month. One is like a stress test fore my legs!
The liver doctor I trusted so much is on medical leave (a brain tumor I heard), so I scheduled with another in his office. I still don't know what I'm doing, but I just want to have the two doctors figure this out. I know deep down it'll come back to my liver. She'll be imaging all the mesenteric & renal arteries with duplex and ordered PVR w/ exercise. LOL. I'M STILL LOOKING UP DEFINITIONS. LOL.
I just want to encourage you. DON'T GIVE UP! You won me over when you always say, "love & hugs" So sending hugs your way tonight.
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