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Ron50

foxy
Posts: 188
Joined: Oct 2005

I have been waiting for news of your new treatment with, Cyclosporine.  How are you?  

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

             I started on the sixth jan. So far not too bad. Some headaches and I can't get my bp under 155 even on two max dose bp meds. I have my first lot of blood tests this week and I see my kidney doc on monday week. What concerns me is that the effective dose is around 5 mg per kilo of body weight. He has started me on a really low dose to see what happens . I am under a mg per kilo at the moment so the dose has to increase by aboutx7 . It will be interesting to see how I fare then. It is interfereing with my sleep tho I don't think I will ever sleep well again with the neuropathy. Have they tried you on any different treatments for your neuropathy and arthritis? I go to the cardiac clinic on the 30th ,I think I am in for another stress echo and another 24 hr holter monitor. Thanks for caring , Ron.

UncleBuddy
Posts: 529
Joined: Aug 2013

I hope your bp is able to be controlled so they can up the doage for you. I'm also hoping that you'll be able to sleep better. 

I wish you all the best!

Lin

foxy
Posts: 188
Joined: Oct 2005

Ron, my Dr thinks my neuropathy is all in my head.  I am on Naprosyn for the Arthritis 750 mg once daily only.  I have 2 lumber vertabrae collapsed now and another 2 very close to collapse. Things are very different up here in The Far North, we are nearly 3 hours away from the nearest full Hospital. I am going down in the morning to have my tear ducts opened, something I have been troubled with for many years, and tomography on a mass behind my left eye.

I do hope your new drug will make a difference in your life without too many more related problems.  Life is hard eh!

All the very best Ron, I am always thinking of you.

Love Virginia.

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

    That doctors could walk a mile in our shoes. I don't think we have the ability to IMAGINE some of the pain we go thru. I had a stress echo cardiogram today . I can't walk much so they use a drug to raise your pulse. At around 150 beats per minute I thought i was going to explode. Now all evening I feel like I have had a shot of dexmethasone. I don't know if it is any better that they do a test that proves you have severe neuropathy then tell you tough luck ,nothing we can do. Good luck with your procedures tomorrow and I hope that the mass behind your eye is benign and something you don't have to worry about.... Hugs Ron.

wolfen's picture
wolfen
Posts: 1176
Joined: Apr 2009

Ron,

I empathise with you on that procedure & it's after effects. My Ron had that done several times a year for 7 years as he could not walk either. He dreaded it each time because he knew he would feel like krap for several days afterward. As if your poor heart isn't stressed enough already............... You would think by now, a better procedure would be available.

Luv Ya,

Wolfen

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

            I would much rather my epitaph read he died after a short illnes rather than he was medically abused for many years before achieving the same result. I was sitting outside the hospital today after returning the holter monitor when out of a cab came my mate Bob the bootmaker. He has repaired shoes in town for decades. He sat down beside me and we had a chat. He has had severl heart attacks and one stroke. He is 70 and still working. His latest dx is cancer of the spine. I said how bad is it. Into five vertabrae and  five ribs. I asked what were they doing for it.. Chemo. Hmmm hows that going. He just looked at me. He said do you know the doctors greatest concern..... I might commit suicide. Knowing Bob , murdering a stupid doctor would be my greatest concern for him.It is a funny journey ....Life.. Hugs Ron.

wolfen's picture
wolfen
Posts: 1176
Joined: Apr 2009

So sorry about your friend. Totally understand the frustration. Can't remember Ron ever mentioning murder, but there were many he would have punched. He did ask one very rude doctor how he would feel about being thrown through the plate glass window of his office, though.

Hugs to you too,

Wolfen

fatbob2010's picture
fatbob2010
Posts: 372
Joined: May 2012

I have met some real winners when it came to bedside manner on this journey as well.  Three cheers for the Bootmaker.

Art

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