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08-02-2022, 08:56 PM | #1 | ||
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Junior Member
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Hi,
So I don't know where to begin. I'm two weeks post my hospitalization and diagnosis of peripheral nerve neuropathy(motor and sensory). All my tests and my spine are fine. For a little insight, I'm fairly young just crossing the late 20's threshold. I've lost most sensation and movement(90% without meds and staring at the limb focusing on movement) in 4 of my toes and movement in my ankle on my dominate side. My doctor during my first check showed me that it was actually my whole leg that was weak. Before this, I was perfectly fine...no diabetes, social drinker...no reason to ever visit the hospital. I've tried not taking the medications once and that showed me how much they are actually holding back. When i take my meds, I feel fine ,but when i try to walk without my cane my leg well yeah...Some days are harder then others, sometimes i can move those toes and balance other times its a hard no. Some days it feels like I'm being bitten by thousands of fire ants, sometimes no. Does anyone have any tips or insight on moving forward? I'm struggling....and everyone is trying to help ,but its not helping because...the things i used to do ...i can't do or its hard to do. I don't mean to whine ,but it feels like i'm mourning a chapter. I'm also angry because, I don't know what happened. I have no idea how to do this. hi, So i don't now where to start. I'm 2 weeks out the hospital. 4 weeks living with this. I don't know what happened. I was fine. I did nothing. I go to work i go home, rinse and repeat till the weekend. I'm a dad, a brother, a husband, and a father. For my particular neuropathy I have motor and varying sensory. I've lost most function in four of my toes, ankle, and have leg weakness on my dominate side. I can walk albeit extra clumsy and the pain may/may not flair up so its best to have my cane at all times. I have to admit I'm struggling. I'm struggling because no one including my doctors knows how this happened. I'm struggling because when i tried not taking meds,(i was trying to power through to get back to work and my normal quicker) I thought i couldn't stand the air or a blanket touching me. I have good days where its just numbness or days where I'm extraordinarily sensitive to touch I'm angry because there hasn't been a linked cause to this effect. Everyone wants to help ,but i don't know exactly how to help myself. Most of my old activities are harder to do: cooking, Sunday walks with my kid, driving to discover new restaurants, and my own dream of having a business in the food industry feels all derailed. I'm struggling to define what my new normal is. Does anybody have any tips or hints to make this new adjustment? I really appreciate any help. Last edited by Jomar; 08-02-2022 at 10:03 PM. Reason: merged |
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08-03-2022, 08:11 AM | #2 | ||
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Magnate
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And in there is a more specific diagnosis besides sensory and motor neuropathy?
Given your age, and the fact that this has come on quickly, the most obvious avenues to pursue would be a toxic or autoimmune situation, and a lot of those etiologies are to a considerable extent treatable. I highly recommend the following paper to see how the diagnostic journey should ideally unfold: An Algorithm for the Evaluation of Peripheral Neuropathy |
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"Thanks for this!" says: | echoes long ago (08-03-2022) |
08-03-2022, 09:10 AM | #3 | ||
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Grand Magnate
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Welcome cyoung35.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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08-03-2022, 11:58 AM | #4 | ||
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Junior Member
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No, I between the neuro, ortho, and internal medicine I had for my hospitalization..my dx's differ. My scans show no spine damage, tumors or any classical signs. They are classifying based on what they can see, their tests and my updates which I'm keeping a small journal of because my tests say I'm a healthy male who should be playing basketball. My current neurologist has 5-7 working theories. So far everything is coming inconclusive …I think we are doing a another blood test soon so i think theory 3. thank you for the paper, I'll be happy to read it.
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08-03-2022, 02:55 PM | #5 | ||
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N/A
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So you have no ideas why all this damage has hit you? I went thru a horrible knee infections back in 2016 and didn't walk for over 2 months until the docs found the staph infection in my knee. I'm way older than you and I am disappointed with my team of docs that they didn't find the staph infection for months. The infection I believe was from an injection in my knee by another doctor.
I didn't have any nerve damage issues until my 70's when I had a hip replacement. I don't believe the damage just starats, there is a reason or reasons. |
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08-03-2022, 11:21 PM | #6 | ||
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Junior Member
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no idea, 4th of July I was fine. I enjoyed fireworks, my family... That night my knee hurt a bit, but otherwise fine. then two weeks later my leg is swollen i can't use 4 toes, my ankle, and i had a limp(that resolved itself once the swelling went down).
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08-04-2022, 12:40 PM | #7 | ||
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N/A
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Strange, no idea????? Maybe the fireworks jolted your body.
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08-04-2022, 01:14 PM | #8 | |||
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Co-Administrator
Community Support Team
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Odd such a quick onset.. if nothing is found by standard medicine.. maybe consider alternative care.
Just mentioning a few to look into if interested . Seek out the best practioners available in your area.. Chiropractic Acupuncture Naturopath Possibly physical therapy.
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08-04-2022, 01:23 PM | #9 | |||
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Co-Administrator
Community Support Team
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Just thinking . Did you sit or stand on crooked ground watching fireworks , or trip or fall or anything similar before thid happened?
Any long ago injury, car accident etc?
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08-08-2022, 10:56 PM | #10 | ||
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Junior Member
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I am sorry that this has happened to you at a young age. My neuropathy has progressed over a long 20 year period. Diabetic, Low B12?, Low D vitamin?, Statins? I don't really know, but it is getting worse daily and the pain and hopelessness is out of control. I have been seeking help for years, and it is not happening for me. so I really don't know what to offer since I have found no long term solution. Now the doctors are saying, Diabetic Neuropathy, Fibromyalgia and Chronic Pain Syndrome. I can't try anything anymore...
One thing is for sure, you are a damn good writer. |
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