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Axonal Sensory Neuropathy
I've had it since 2018. Gapapentin works better than anything else my doctors have prescribed.
This condition gets worse ... my doctors have ramped up the dosage accordingly and tried augmenting other medicines too.
Now, I'm transitioning from 800 mg. 3 times a day to the Extended Release Gabapentin, called Horizant, 600 mg a day, supplemented with 300 mg of the short-acting gabapentin as needed. I get it from a mail order company that is charging $60. It costs hundreds if I go through my insurance/medicare.
During this transition, I was undermedicated for a few days. Axonal Sensory Neuropathy is very painful - I felt like I was being electrocuted from the inside out and I was burning hot on the inside but not outside, no fever. When I have been undermedicated before, I have felt like I was standing in a bonfire as big as a city block, and red hot swords are shooting like lightning up my legs. My neurologist said she has heard similar descriptions from other patients who have neuropathy.
Do you have the same type of neuropathy that I have? What helps?
Peggy
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I just saw on mainstream news today that a cancer drug is healing nerve damage within 4 weeks time. And even people with spinal damage. The name of it is only letters and numbers. AZD1390. It is pill form.
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3 ReactionsPeggy - Axonal sensory is really strange. I feel there are many causes and symptoms so different to many of us. I have both axonal sensory and motor neuropathy and although I did have some pain in toes early on, now main issues are numbness and motor issues from shins to toes. No med at all has helped me, tried several including Gaba and Lyrica since 2016. I hope your adjustment in meds work out for you! Be well!
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4 ReactionsPeggy,
Somehow my response to your question yesterday vanished before I could send it. So, I try again.
I have had idiopathic small fiber peripheral neuropathy since spring 2020.
The med prescribed for me for pain and sleep is Gabapentin 300 mg once a day before going to bed. I am unsure of its efficacy. I say this because I engage daily with mindfulness exercises, PT for balance, walking and light weight training. Also, I regularly massage my feet and legs and do foot and ankle exercises to increase circulation. Finally, I am addressing lower back pain by sleeping on my back since the spinal-core and neurologist docs found lower back disc degeneration. In conclusion, I surmise that all of these things help one way or another to lessen pain and numbness, help me sleep, etc.
Don
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3 ReactionsThank you all for your input. My condition is progressing. I can't find anything about it on Mayo Clinic or other websites, just Periferal Neuropathy but it's different and milder. Now I'm getting Renaud's in my fingers, off and on all day. I'll try to find a Neurologist here in Delaware. I asked Mayo for an appointment but they said they were booked up with Neuropathy patients. I will ask about the cancer treatment mentioned above.
I hope you all find help, aid, and comfort. Peggy
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3 ReactionsI live in South Jersey and was able to get an appointment at Johns Hopkins in Nov of 2021 and they have a very comprehensive neuro division. Just a thought. Ed
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3 ReactionsThank you! I'm in Bethany Beach DE, about 2 1/2 hours drive from Johns Hopkins. I didn't think of them. I'll try to get an appointment there. What did they do for you?
Peggy
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1 ReactionPeggy, good question - I had applied to both Mayo and Johns Hopkins. Mayo contacted me first, so I went to MN in Feb 2020. On Medicare, only MN will accept in 2020. In March 2020, pandemic hit and J. Hopkins contacted me. I said too risky to make appt. In mid 2021, I contacted them for a second opinion, and I wanted a more current evaluation of my PN. Went there in Nov 2021 with my Mayo results in hand, they confirmed all that Mayo said. Exam was 2 hours with a neurologist in field of PN. They did not do any diagnostic tests because of what Mayo did 20 months prior. I recently heard that Johns Hopkins expanded their neuro division. I guess a lot more people developing PN. I would suggest you make every effort to go to Mayo yet...do as I did, apply at Johns as well. Take the first appointment you can get. We live right across the Del Bay from you and yes, traveling is necessary to get the best answers and more importantly, the right answers. Good luck. Ed
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4 ReactionsCan you please share information on the cancer drug AZD11390 for treatment of axonal sensory neuropathy?
Peggy,
I have spinal stenosis and peripheral neuropathy. The former likely has caused pinching of nerves resulting in the latter. Spinal surgeons have given me injections but none help and, due to my age, they will not treat my condition surgically. Consequently, I am hoping that back and core exercises done daily can help. That seems to be the case. The pain occurs much less frequently. Another thing I do, strength training, has
restored some of my strength and balance. Finally, mindfulness routines, done at bedtime, have proven useful. I'm not winning the war but I am winning some battles. I can't say enough about the benefit of exercise targeted to restore particular body parts. In the past I have been able to regain use of a shoulder and knee that way. Years ago an orthopedic surgeon
said the two main options to regain use of the shoulder were to do physical therapy or take on surgery. In that context he cautioned that shoulder surgery has a troubling success rate and recommended trying to help the body restore itself. That has now become my mantra.
Hopeful that you will find peace,
Don
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1 ReactionAre you taking the compound now? Did Mayo Clinic start you on the drug? Hope so; I am interested.,