Diagnosis or not?
Posted , 9 users are following.
After 2yrs. of uncertainty, my Rheum. sent me for a second opinion to a Professor of Vasculitis at a different Hospital. She cut my Pred. to 15mgs. from 20mgs. then sent me for a second PET/CT scan, a bone scan, and a CT angiogram on my aorta. The PET/CT scan was negative (allowing that the Pred. could interfere with the rresults), the others were also negative. I had a Temporal Biopsy in Nov.2015 which was non-specific. They have now reviewed the Biopsy and say it is consistent with a diagnosis of GCA. as it shows a moderate chronic inflammatory cell infiltrate across all three layers of the vessel wall. There is more, but I can sense snoring and boredom setting in. My CPR rate has never really fallen, Ihave had a few urinary tract infections, for which I am now taking antibiotics. I want to breath a sigh of relief, then I think I am going barmy as, who wants this disease? I am grateful to the Professor who has moved things along at great speed. I would also like to thank Eileen once again, who recommended I ask for a second opinion, and once again she was right. Lets hope from now on things get better.
2 likes, 25 replies
Michdonn catherine34621
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catherine, how are you feeling that is important. Think positive and it will help to make things better. Good luck on the rest of your journey. Thinking positive and smiling. 🙂
catherine34621 Michdonn
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Michdonn catherine34621
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You are welcome,🙂
amkoffee catherine34621
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Dear Catherine you asked if anybody's ever asked for this disease. Well actually I'll tell you when I was born I was hoping for this disease when I got older. Oh I prayed and beg God for the disease and thank the Lord I got it!
This is all in fun
Michdonn amkoffee
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amkoffe, life is what you make it! Nobody ask for a disease, my dad was a diabetic, when I came out of the service 55 years ago I found out I had high blood sugar. I changed my diet and started exercising. I mentioned to my younger brother maybe he should have his blood sugar test. Many years later he was talking to his Godchild a doctor, and said his hands were so painful, he was having trouble sleeping. His neuropathy is much worse than mine. I think positive and smile, PMR is not a life time disease there will be an end, in the meantime I will enjoy each day the best I can. 🙂
EileenH Michdonn
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Michdonn EileenH
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That means I have a 95% chance that my journey will have an end. Now that odds I like EileenH, thinking positive. Smiling 🙂
amkoffee Michdonn
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Oh Michdonn how I wish I could have your optimism. But I have five conditions that cause pain. It's a little ridiculous because a year-and-a-half ago I only had one. So I've watched my body deteriorate further and further in the past year-and-a-half and it's very hard to be positive in a case like this.
And when you add the stressors that are in my life as well it is even more discouraging. Everyday I have to convince myself to stay alive. That is the best I can do.
And before you suggest help I just want to make sure you understand that I am not suicidal. I have no set plan on how I would do it. I am also seeing a therapist for cognitive therapy and I'm on medication prescribed to me by a psychiatrist.
Michdonn amkoffee
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amkoffe, have always tried to be positive, but really learned from my wife a three time cancer survivor. She believes strongly in the power of positive thinking. Years ago she had classes at a local hospital for cancer patients, so I have very good company. Smiling and thinking positive. Please try to be positive, life sometimes knocks you down, but you can get up and continue on the journey. I try not to count the bumps on the journey and make the best of it. 🙂
Anhaga amkoffee
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Amkoffee, it can be very difficult to have a sort of diffuse "positive" feeling when all seems dark. But try this technique. Breath deeply a few times, best if you are outdoors in a reasonably natural setting but anywhere will do. After a couple of cleansing breaths focus on an area, maybe you have a particular pain somewhere, or a particular issue really worrying you. Hold that breath and direct healing towards the area. Then release the breath through the mouth, thinking "toxins out" at the same time. Do this about three times, then a couple more normal breaths, and get on with your life. I was doing this one day quite early on my PMR journey as I walked along the harbour trail near my home. A woman coming towards me stopped me and said when she first saw me in the distance she thought I was ill, but as I got closer she could see that I was all right. I regret to this day that all I did was laugh it off and say, it must be the medication, because I should have asked her what she saw. I think what I was doing, directing healing to my body, was having an effect of some sort. I have to say that I've done this a lot of times over the years and never at any other time has anyone ever stopped me to tell me they could see my aura! But I do find it has some sort of helpful effect.
Bethune amkoffee
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Take care and pamper yourself a bit when you can
Michelle
EileenH catherine34621
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catherine34621 EileenH
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Anhaga catherine34621
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Was it a bone density scan?
Also, have you ever tried any of the slow tapering plans we talk about on the forum, like dead slow nearly stop? I mean, have you been trying to drop from 15 to 12.5 all in one step? Some people can do that, many find it difficult, and my doctor never even mentioned it, just told me to drop by 1 mg at a time so I have never dropped by more than 1 mg at a time.
Which thought gives me pause as I'm currently managing a flare and thought I'd go from 7 to 5, but now a little voice tells me not to do that!
EileenH catherine34621
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Prof Mackie then? Or her colleague whose surname escapes me ... No it doesn't - Ann Morgan.
catherine34621 EileenH
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catherine34621 Anhaga
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EileenH catherine34621
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I think she is superb - had lunch with them both (the 2 M's) a couple of years ago. Wish it could have gone on longer! Who sent you to her?
linda17563 EileenH
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It is such a shame that these wonderful rheumatologists are so few and far between......😕
catherine34621 EileenH
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My Consultant Dr. Sabanarthan who tried everything she could, Bone marrow tests etc., she admitted she was stuck which I totally respect her for. She is a good Consultant and didn't hesitate to send me for a second opinion, which my G.P. wouldn't do.
EileenH catherine34621
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catherine34621 EileenH
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I am a quiet soul usually, and after my Dr. said it wasn't in his power to send me for a second opinion, at my next Rheum. visit, I had plucked up my courage to ask her if she could send me, she beat me to it and suggested that I go to Leeds to a team that specialises in these things. I had a long wait but hopefully it will be worth it.
EileenH catherine34621
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