Trading enemies

So it's been a while since I've been on to update you all. I wish I could report good news but I have trade one evil for an eviler one. I left you all off last time with beings diagnosed with sjogrens and scleroderma to accompany the Ankylosing Spondilititis. Well I wanted to get the best care for myself so I could try and get somewhat of my life back. Especially with the rate of deterioration my disease was going at. So I started going to the Mayo Clinic here in Scottsdale Arizona. After many appointments and test I was told I was missed diagnosed with the scleroderma and sjogrens and the real culprit was Autonomic Neuropathy with P.O.T.S. They said that because of being diagnosed with autoimmune disease that is why I probably was missed diagnosed with the scleroderma and sjogrens. So now there is a shift in gears and they are trying to find out why my autonomic system is failing. It has already affected my digestive, urinary, heart rate and blood pressure and saliviatory glands. So like I said I have traded one enemy for another. I'm grateful for actually having answers but scared of the future and what it holds for my family.

So this where I leave you now, staying strong the best I can... Just wondering when the nightmare ends.....wanting to wake up

11 Replies

  • So sorry about your recent diagnosis but you now have a firm diagnosis which means you know exactly what you are dealing with! I imagine that you are feeling quite scared at the moment and I hope that you get the help and support in dealing with this latest blow. Good luck and keep us informed of how you're doing xxx

  • I wish i could say to you that it does end,but i can't. For me it is the endless tiredness and fatigue that gets me all the time. I always look tired and exhausted. Hugs .xxx

  • I don't know what that is? Can you explain your diagnosis?

  • There are 3 nerve systems. Sensory, motor, autonomic. The autonomic system controls all the things you don't think about, heart rate, blood pressure, sweat, salvia, digestive, and urinary to name a few. In autonomic neuropathy the system is not functioning correctly. P.O.T.S. stands for postural orthostatic tachycardia syndrome. This is were any posture change, lay down to sitting etc., my heart rate will shoot up over 30 beats more a min during posture changes. This makes me burn 3 x the energy to simply change posture. This puts extra strain on the heart also. So you combine that with the neuropathy which is causing my B.P. to go all over the place.. For instance after standing for 20 minutes my B.P. will drop to as low as 80/50s range or going to bed my B.P. will raise 150/90s. Then there is all the other issues with the digestive, saliva, and such. Its hard to explain it all and I'm still trying to get my head around all of this too. The doctors are still trying to get the full extent on where I am at in this and still have some test we are doing.

    But for now they are trying to keep me comfortable, pain meds and such, till the game plan is set, which is hopefully soon.

  • Owwwww!!! Goodness me , even when I lay in romantic moods my heart doesn't speed up

    That much( hope you can take the joke) xx

    Well I do hope they can get you sorted and more comfy, thanks for telling us about it , the nervous system is an amazing thing xxxxx

  • Yeah I can take a joke from time to time. Its funny when my wife and I were dating I let everything be know no secrets you know. She knew exactly what she was getting into. Well about 3 years latter I had a lymphoma scare while on Enbrel. After all was cleared up we were talking and she stayed I needed to take better care of myself so I'd be around long and that I only had 15 years left. She ment that I would be severly handicapped but came out I was going to die in 15years. To this day every once in a while I'll throw in there well I only got 8 years left haha. I still have a good aditude bout life for the most part it's tampered a bit but still there..

  • Yes that's a bit of an awful thing for them to say tho. How go they know when someone's time is up? Answer they don't!!!! I know loads of folk oh you will have 6 mint oh 5 years whatever and they are still on the go. I suppose enjoy each day as best you can and try not to live by a time? But by now xx

  • You must be feeling that the nightmare is neverending. I do hope that some effective treatment can be found, and that you are getting support from family and friends.

    Do keep in touch, best wishes. Mx

  • It saddens me deeply to hear of this. I truly hope and pray that now u have been "properly" diagnosed as said above u will receive care need and what u fear will happen at a ripe old age. Please do as far as is humanly possible do keep us informed. Hugs

  • Oh no G

    Poor you! Well done for going to Mayo it worked out better for you. I hope the doctors there can do something to aleviate your symptoms. Sounds so bad. We are here for you if we can help let us know. Sending gentle hugs take care G

    Kiki x

  • hi, I wish you strength to fight the horrible things that are happening to you. very best wishes.

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