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Old 05-20-2018, 02:11 AM #1
sprcko sprcko is offline
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sprcko sprcko is offline
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i am diagnosed with sensorimotor axonal polyneuropathy of large fibers,left as idiopathic,, any one has same diagnose,or axonal type of polyneuropathy, can me contact,here plaše to see how is diagnosed i am in Europe and my country tested only CMT 1A,Thanks in advance.
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Old 05-20-2018, 08:14 AM #2
Shak2388 Shak2388 is offline
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Hi sorry to hear about your diagnose..i am not diagnosed with anything but I'm leaning towards SFN..i can tell you want someone to talk to but unfortunately not maybe in this support group reply to posts.
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Old 05-20-2018, 06:56 PM #3
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echoes long ago echoes long ago is offline
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echoes long ago echoes long ago is offline
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Quote:
Originally Posted by sprcko View Post
i am diagnosed with sensorimotor axonal polyneuropathy of large fibers,left as idiopathic,, any one has same diagnose,or axonal type of polyneuropathy, can me contact,here plaše to see how is diagnosed i am in Europe and my country tested only CMT 1A,Thanks in advance.
hi it is diagnosed here with an EMG/NCS electromyography/ nerve conduction study.
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Old 07-16-2018, 08:56 PM #4
Equine Dentist Equine Dentist is offline
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I am very sorry that you have found yourself here. I am 7 years into this myself. I do not respond to people because I do not want to be the bearer of any news that might affect someone's hope. My journey has been long and painful. I cannot believe how my body is now. I am great for a bit and then terrible for a bit. Every single time I feel good, I analyze everything I did so that maybe I can figure out "the puzzle ". I have seen two of every doctor and have had every test, injection and epidural possible..I took countless prescriptions and fought like hell everyday to keep working the farm. In 2015, my Neuro suggested medical marijuana. I conceded in 2017 after a surgeon very bluntly told me that I was never going to feel better and that this is my cross to bear. I hated it at first until I got a hang of what routine works for me. Now I work 7 days a week on the farm and I have a 2 year old. I have my bad days (like today), but most of the time i am pretty good if I follow my routine. For Me, I have to take my vitamins, keep cbd in my system whether I feel like it or not, add light doses of thc to make me smile and laugh, never have a full stomach and caffeine. I don't mean those crazy energy drinks, just an espresso. I focused on fixing myself for 4 long years. I even went Rocky Balboa and starting using my barn as a gym. It was so hard in the beginning. Now I have a rockin body that is still weak as hell sometimes. Once I stopped looking for a cure, I relaxed and learned how to manage this. The medical marijuana works for Me, i.choose to use it for energy and weight gain. This is my story, you can probably understand the difficulty in not being able to tell someone what they want to hear. But we have all been you and it's only fair to at least tell you that no matter what, with determination, it's possible to do much more than you think you can. It's so hard, I truly am sorry
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"Thanks for this!" says:
zygopetalum (07-29-2018)
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