Complications with Peripheral Neuropathy

Posted by kadfrompa3232 @kadfrompa3232, Jul 25 8:36pm

I was diagnosed with PN in 2018 with symptoms of tingling and pain in my feet. First Medication was gabapentin, (caused dizziness and falling) along with baclofen. Now on Lyrica, Baclofen (3X's day) ,
Cymbalta at night for cramps, Lidocaine/Prilocaine cream on both feet, especially top and bottom of toes. The neuropathy is now in both feet, in calf muscles in both legs, Additional symptoms are pain, stabbing, shock like pain, balance issues (using cane) severe burning in both feet, both legs have redness where nerves are irreparably damaged. Pain is so bad at times I cannot walk without pain and it prevents me from walking and participating in many areas I loved to do in the past. Many alternative treatments, hard to know if any really work. thank you.

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wolfplanetzero | @wolfplanetzero | Jul 30 3:12pm

In reply to @annie1 "I haven't really been diagnosed yet. What type of doctor do I go to get diagnosed,..." + (show)

A general neurologist might be a good place to start. Best of luck to you.

terry1976 | @terry1976 | Jul 31 8:52am

Are you near a major medical center/research oriented facility? Neurologists specialize so one familiar with epilepsy, for example, will be unlikely to help with PN
And what to you think is the underlying cause?
PN is a symptom of something else, not always easily identified.
for some, major changes in diet--away from any sugar laden carbohydrates, processed and ultra-processed foods and towards more whole vegetables, the Mediterranean Diet and similar, is beneficial in alleviating symptoms. also, eliminating alcohol

More than 100 types of peripheral neuropathy have been identified, with 10 major categories of causation.
Your primary care physician should be working with you to rule these out.
Autoimmune disorders
Diabetes (a metabolic disorder) & other metabolic disorders
Infection
Inherited disorders
Tumors
Bone marrow disorders (my husband's category)
Toxic exposures (chemicals, heavy metals, often from workplace exposure) & or alcoholism
Physical injuries
Medication side effects
Vitamin deficiencies
And, the idiopathic form of PN, which has no understood cause.

annie1 | @annie1 | Aug 8 3:46am

I'm so sorry.You're having this horrible pain. They haven't really diagnosed me yet but I have throbbing and twitching in my Calf muscles They were attributing it to my Severe lumbar stenosis. Today I went to a neurologist and he Said the pain is from the muscle Over.
Reacting And game Me a shot of botox In my cat bustles Has anyone ever had an injection Of botox for this?

julkun | @julkun | Aug 9 10:30am

So sorry to hear your horrible experience. Unfortunately, I've been there and done that. I am resigned that there is no cure but there are ways to reduce the pain. You've tried some. How about a spinal cord stimulator. I am considering this. You try a temporary for about a week. Either it works somewhat or not. Then you decide if you want a permanent implant. Little to lose and a lot to gain, I think. That's probably my next step. Get well!!!

jenatsky | @jenatsky | Aug 13 2:35pm

@kadfrompa3232 I too was beginning to develop same symptoms with my PN too. So I started taking Turmeric 500mg caplets and now I have many fewer episodes of numbness, tingling, shooting pain in my feet and legs. I also stretch a lot and find that doing this before bed helps me prevent night time problems.

strawberry10 | @strawberry10 | Sep 2 8:10am

In reply to @annie1 "That's very interesting.Thank you for the information. I have lumbar stenosis Which causes spasms and? Twitching..." + (show)

Yes it does because that is what it does. You need a neurologist to do a nerve study and to do a DNA test to see if it actually is CMT.

sharka | @sharka | Sep 3 5:28am

On worse days/nights compression sleeves helps the most🤞

web28 | @web28 | Sep 4 10:02am

In reply to @terry1976 "Are you near a major medical center/research oriented facility? Neurologists specialize so one familiar with epilepsy,..." + (show)

I have the idiopathic form of PN that has advanced to the central nervous system. It started after acdf c3-c6 surgery(which was successful in correcting most of my severe spinal symptoms). Started with a hypersensitivity to touching any metal and soon advanced to fabric, both clothing and fabric/leather furniture. I started with the metal-LTT analysis blood tests(Orthopedic Analysis) and a patch test by a dermatologist. When both were negative for all metals I was referred to a rheumatologist and a neurologist. After many kinds of blood tests and neurology tests the rheumatologist found nothing that applied but I’m continuing with the neurologist. Tomorrow is my third. Other than prescribing baclofen for muscle spasms(my pcp put me on Gabapentin) he has not come up with a diagnosis but more importantly no kind of treatment. At the second appointment he said no to PT, myofacial release massage, pain management, even water aerobics, as they could increase the damage. At tomorrow’s appointment my husband and I have decided he needs to come up with a treatment plan or refer me to another neurologist. Very frustrating and scary as my nervous system increases its hyperactivity to perceived threats.

terry1976 | @terry1976 | Sep 4 11:32am

In reply to @web28 "I have the idiopathic form of PN that has advanced to the central nervous system. It..." + (show)

Did patch test include any tests for sensitivity to surgical gkues ir adhesives used in the ACDF? I was recently reading someone's experience with thise types of sensitivities. Idiopathic PN is so challenging, because it's a matter of ruling out so much other stuff.

annie1 | @annie1 | Sep 7 1:00am

In reply to @strawberry10 "Yes it does because that is what it does. You need a neurologist to do a..." + (show)

What is CMT ? also, I'm on Lyrica for nerve pain and had spine surgery on March 1. On my discharge papers it just said don't take Oxy and Lyrica together, space them out 2 hours. But when I google is it safe I just get dire warnings. Anybody know what is right ?