Diagnosis or not?

Thank you.

 

You are welcome,🙂

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. 🙂

I hate to bring this up but for 5% of patients active PMR is a lifetime disorder. And for all of us the underlying autoimmune disorder remains with the potential to wake up. 

That means I have a 95% chance that my journey will have an end. Now that odds I like EileenH, thinking positive. Smiling 🙂

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.

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. 🙂

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.

Amkoffee,  im so sorry to hear your conditions have increased in number and pain.  Good for you to be in therapy, and Im sure a good cognitive therapist can give you many techniques for minimizing  pain and dealing with stress and depression.  Sometimes our reality is very painful and it is difficult and perhaps even incongruent to feel or think positively. I admire your best efforts to carry on despite not feeling there is much to be positive about.  Also, while positivity  can help, it is not magic, and there is no guilt in not being able to generate it when things are so tough.

Take  care and pamper yourself a bit when you can

Michelle

St.James teaching Hospital in Leeds, I have never been able to get below 20mgs. of Pred. my Rheum. tried and I felt shocking, but the Professor told me to try again, and if I felt bad to try the larger dose every other day, then go back down, I managed to get down to 12.5gms. but had to go back up to 15mgs. I tried again to 12.5mgs. and she said I would have to have the PET/CT repeated, I got home and they rang me and got it booked 6 days after, she now wants my Dr. to commence a disease modifying agent, recommendingLeflunomide,(I sound as if I know what I am talking about but I am just copying it from the letter she sent me.) I have also had a Bone scan, which no-one mentioned before. I believe everyone has done their best, but not having a diagnosis for 2yrs. is soul destroying. Thanks again for your help

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!  

Prof Mackie then? Or her colleague whose surname escapes me ... No it doesn't - Ann Morgan. 

You were right the second time Eileen, Professor Morgan.

Yes it was a bone density scan.I have never tapered less than 2.5mgs. a time I am back up to 15mgs. since my investigations as the Dr. said I could do.

 

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?

It is such a shame that these wonderful rheumatologists are so few and far between......😕

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.

Glad to hear you have at least fallen on your feet when it comes to doctors!

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.

If it is Profs Mackie, Morgan and co, I promise it will be worth it!