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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
I have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
Replies to "I have non-length dependent small fiber sensory neuropathy, which means it is from the top of..."
I have just read your story and I am so sorry you are going through so much with neuropathy. My problems with this illness seems minor now compared to what you are going through. I wish I could offer some solace in a drug that would help you but I can’t. I can only tell you that my prayers and thoughts are with you during your struggle and I am sure you hear this a lot from others but the power of prayer from so many can work miracles. All the best
Carol
@frattmaa
Wow! I thought I had it rough until I read your post! Your suffering must be unimaginable! I suffer from chemotherapy-induced peripheral neuropathy. I was diagnosed 6 years ago with mantle cell non-Hodgkins lymphoma, subsequently underwent an aggressive form of chemotherapy, and was deemed in remission 6 months later. At the time I was warned that neuropathy was an outcome I could expect from this treatment regimen. I accepted this fact not really understanding the severity of pain I would experience. Almost immediately, I began to have pain and numbness in my hands and feet. I was treated first with Neurontin, then later we tried Lyrica. Lyrica was completely ineffective for me, so Neurontin was restarted and I presently use 3,600mg daily, though over time this has been supplemented with hydrocodone. I now have to use 50mg hydrocodone daily to mitigate my pain, though I have periods of up to several days at a time where even this amount of opiod use is ineffective. I recently have been pursuing the idea of a spinal cord stimulation surgery. I have read many good things about the improvements in technology and quality of life from same. However, my pain management physician is doing everything he can to discourage me in this endeavor. He asked me to do some further research related to this procedure and the potential negative side effects of this form of pain management. I have since done so and am now of the mind to wait on this procedure. For one thing, my HMO doesn't offer the latest technology, and I also suspect the doctor who would perform the surgery has little experience in this type of surgery. I have read many real horror stories from people who have had the procedure only to want it removed for the additional pain they suffer from the spinal surgery alone. Anyway, I suspect I may not benefit and just wanted to give some perspective to my own circumstances. You, my friend, have all my sympathy and prayers for peace and rest. I will not complain so often about my own suffering after reading what you and your son are experiencing. God's blessings on you and yours!
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I'm so sorry for all you are going through and the emotional pain of knowing that your young adult son also has this condition.
My understanding is that small fiber neuropathy is a rare condition. Is your condition rare? Have you or your son had genetic testing?
I'm so sorry again. I'll pray for you both.