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Nerve damage and pain that isn’t neuropathy but feels like it.
Hello.
For over three years I thought I had diabetic neuropathy. All the signs and symptoms, burning, stinging, numb areas, boring sensation. I was told I had it and have rec’d treatment of lyrica and lidocaine.
A recent EMG study showed severe chronic lumbosacral polyradiculopathy worse at L5 and S1 and chronic cervical polyradiculopathy that is more severe at C5 & C7.
I was told by my neuromuscular doctor she does not see neuropathy of my feet (yes in right ulnar…) I am blown away, thinking all this time there was nothing else I could do except keep blood sugar in check which it has been between 6 - 7 hba1c. I was told by another doctor that neuropathy usually flairs at 11. Her having said that and me also having bad spasms in: hamstrings, calves, feet and toes made me wonder if it was neuropathy. Foot drs and neuro’s tested feet, yes they said to neuropathy.
The upshot of this is there is something going on with me that they are trying to diagnose…pinpointing what exactly it is and how it can be treated. I have to have an mri lumbar and ct to evaluate benign thymoma with and without contrast. My exams are in may. The have no sooner appointments.
My doctor is good, the one I see now. I trust her. She is thorough and taking me seriously. I was referred and there was a min of four month wait. It’s a long time to not feel good having strange things happen.
From one minute it feels like a bee stinging. To other deeper boring pain. The muscle spasms in the balls of feet and toes are so stiff and tight I cannot walk heel to toe without pulling the muscles. I fear I’ll snap it, its so tight now and the toes feel like 2nd degree burns or worse, I have skin sensitivity that feels like I have a bad sunburn and it hurts to touch.
The question I am trying to ask, is this: being I don’t have neuropathy but severe nerve pain and damage does anyone have any experiences with this?
I cannot sleep with the lower back causing tingling in both legs. I also have a problem with balance and use a cane. I am working on having a railing installed in the hallway so I don’t fall down the stairs. I use the walls now.
Does anyone have any encouraging thoughts? Within two years I’ve not driven because I could not feel the pedel It’s gotten worse. I fear I will end up wheelchair bound. Yesterday my legs felt weak and shaky. The left gave out for a split second. I would have dropped if it “went”.
Has anyone been through this anything like this? I looked up polyradiculopathy and didn’t get a whole lot. I did get pub med but that stuff is too complex. If I’m in the wrong place could someone direct me.
Thank you.
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nemo1, I think you do have neuropathy, since that is defined as damage, disease, or dysfunction of the peripheral nervous system. It sounds like the real question for you is what caused this. And it sounds like you are close to getting an answer to that question. Regardless, it sounds like it is not responding to the treatments you have, or it was responding, but is getting worse, as neuropathy tends to do.
Have you had skin biopsies to look at your nerves and define what type of damage they have? These are usually ordered by a neurologist, and are done on the ankle, above the knee, and upper thigh. This biopsy gives specific information that would clear up confusion about your specific neuropathy symptoms.
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4 ReactionsI read your post with interest because I have symptoms of burning, tingling and occasional stabbing knife type pain in my feet, progressively getting worse over the last three years. I am 70 and I am diabetic, but have maintained a A1C of 6.2 to 6.5 for over 15 years. Your comment of "PN flairs at A1C over 11" was eye opening. 10 years ago I had two emergency back surgeries on L5S1 to remediate foot drop, paralysis in my left leg. The surgery was very successful and I regained all strength in my feet. However this neuropathy is definitely a big concern and might be a result of the paralysis of years ago... NOT because of diabetes. Thank you for your post. I'm going to focus on back issues as a cause, not diabetes. Best wishes in your search for some relief. Don't give up. It is not fun to see your mobility and quality of life begin to impact the joy of daily living.
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4 ReactionsThank you for that. I have not heard about skin biopsies diagnosing neuropathy. I have accompanying these “neuropathy or neuropathy like” symptoms muscular symptoms. Spasms, twitching and a lot of pain as a result. I appreciate your feedback. After the different tests I’m due to have, If I don’t get answers I will ask about the biopsy. The doctor said when I asked, that all the symptoms I’m having is caused by the LS Polyradiculopathy. If I receive therapy for this and it fails, Iwill ask her to take next steps or see why she won’t do a biopsy. She was looking in the direction of Myasthenia or another muscle problem that is uncommon (which we are waiting for bloodwork back from the Mayo Clinic). I will see what she says about a biopsy. Thank you again.
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1 ReactionWow, you had/have problems at L5 and S1 like I do with “neuropathy”. The doctor is looking to see in an mri if it is due to compression or inflammation. It’s with contrast. I think my doctor knows more than what she is letting on. I will wait for exams and hopefully get answers. I wish you all the best and hope you find answers as well.
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4 ReactionsLike julbpat, I think also that you have peripheral neuropathy. Am wondering if any of your healthcare providers has ordered an EMG. It is an outpatient test which yields immediate results (and diagnosis, if appropriate for that particular provider to share at the time). I would tend to take part in most all tests that your insurance will allow. Hopefully you will get a definitive answer. I sure wish you the best as you continue to look for answers and relief.
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4 ReactionsHi Bjk3
I had an EMG on 4/7. It shows what I added below from the report from my doctor… chronic severe lumbosacral polyradiculopathy, cervical polyradiculopathy especially at: L5, S1, C5, C7 plus other notes listed in pic below.
So the mri, ct then maybe a lumbar puncture.
Believe me, I was in shock to learn no neuropathy in feet. Hard to believe. I’m in so much pain its unreal.
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1 ReactionHi…as a point of clarification…the EMG test you had will only find evidence of large fiber neuropathy. As some mentioned, it takes biopsies to detect small fiber neuropathy. This small fiber neuropathy may be what is causing your foot pain. It sounds like you have good medical care and plan to talk of possibly having the biopsy. Best wishes to you.
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2 ReactionsThank you for the clarification. I will ask her for that. Is one medication better for small fiber neuropathy? I am taking pregabalin (Lyrica). Can a hba1c of between 6-7 still cause small fiber neuropathy in a diabetic?
Thank you.
It’s hard to get a conclusive answer on that. Some doctors say being PRE Diabetic can even cause neuropathy…my neurologist has been vague about it.
Hello I am sorry to hear that.
I have had tingling, brning, electric shock, buslzzing sensatiin, pain, ... in my feet for more than a year. It started 2eeks after my covid booster shot.
5 months ago, it spread in my calf, face, tongue, ..., but it is consistent and severe in my feet.
I know I have foraminal stenosis in L5S1 (left mild, right moderate), but epidural injection did not help at all.
I did a lot of research and read about small fiber neuropathy (SFN) after covid vaccine.
Just recently I visited another neurologist, and he said 99% it is SFN. Now waiting for skin biopsy. Although he is almost sure SFN is behind my pains, I am still hoping it is not SFN, otherwise I don't know where my life ends up.
I have been taking Gabapantin for 2months, but it has not helped.
I keep you posted when I have the biopsy done.
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