Peripheral Neuropathy !!

[grassdogg]

Anyone have good info on how to deal with an idiopathic peripheral neuropathy? I don't have diabetes od alcohol problem but do have back issues. This neuropathy is kicking my ass!

[Lrcjvl]

Make sure vitamin levels are good. Eliminate grains. Reduce inflammation with meds as prescribed. Sorry that's all I've got 😬! Mine flares with arthritis, have you seen a rheumatologist?

[fbirder]

See a neurologist.

There are a lot of possible causes of peripheral neuropathy, some are treatable, others are not. You will need to have some nerve conduction and electromyograph tests to determine just which nerves are effected and whether is is sensory or sensory/motor.

If they suspect there may be a physical cause (your back) then CT and/or MRI scans will be able to help figure that out. They may also want to scan for any possible tumours to rule out paraneoplastic syndrome.

If the neurologist suspects it may be inflammatory then they may opt for a nerve biopsy, where they cut out a short section of a nerve in the side of your foot. They can then closely examine that nerve at the cellular level and do various tests to see how it responds to various agents. That may give them a clue as to whether or not you might get help by avoiding certain foods.

If the cause is inflammation then you'll be given the option of steroid injections that will quell the inflammation.

If your neuropathy really is idiopathic, like mine, then there's not a lot they can do except to manage the pain. Drugs like gabapentin or pregabalin help lower the general level of pain and cocodamol can be used for the occasional severe burst.

Good luck.

[Horacethehound66]

I have an autoimmune condition that causes it and it can be intolerably painful. My rheumatologist prescribed me a drug called Neurontin which did help, I used it for 3 years but eventually stopped it as I didn't like the side effects. Lyrica is similar but both require getting used too and will make you very sleepy to start with. They also cause 'brain fog' in many users, including myself, and are hideous to come off. That aside they really help the neuropathic pain. Amitriptyline, which is an anti depressant, is also prescribed for pain such as neuropathy and I know several people with my condition who get on well with it. Following an anti inflammatory diet, taking tumeric capsules and fenugreek might help too. Ask to be referred to a pain clinic perhaps? Good luck 😊

[KarC1]

I have PA and had the most excruciating pain in my legs last year. It was dreadful. To cut a long story short, i was referred to a consultant and I am now on Neupro patches. I was diagnosed eithrestless leg syndrome and idiopathic peripheral neuropathy.

[KarC1]

Also, had an MRI scan which showed arthritis of lower spine and arthritis in my neck with osteophytes.

[Schenks]

My tuppenceworth? I had peripheral neuropathy for all of my life, without it ever being diagnosed as such. It got to the point of my experiencing foggyness of thoughts, restless legs, arms and every other b****r, tingling fingers, toes, twitching eyelids and other fasciculations around my body, numbness, sudden excruciating stabbing pains particularly between my ribs, in my back and groin, poor balance and proprioception...all just shrugged off by doctors. Literally.

Cut a long story short, I found out about vitamin B12. Took massive doses orally - no joy. I then began injecting subcutaneously (biggest needle coward) and .... sorted. Hardly any tingling, clear head, no wobbling, restless legs calmed down, no stabbers...

Quick fix if it's the problem, no side effects, water soluble so it wees out, and if it isn't B12 then you could try the big guns, as expertly advised above.

Good luck.

[Lysetta in reply to Schenks]

Do you have pernicious anemia. Lysette

[Jeast]

We had the same experience with injected b12. My early neuropathy in my feet completely abated. My hands are still bothering me quite a bit. My husbands severe foot neuropathy is improving. The pain is much improved. He is getting some normal feeling back. Gets the reflex when we run a hand over his sole. Lyrics and gabapentin were useless. Oral b12 tablet s also ineffective.

[bquoss]

Isn't peripheral neuropathy an indicator of pernicious anemia? I could hardly walk before I began injections of B12, now I feel only occasional twinges when I've walked too much. Maybe yours is not "idopathic" -- no known origin. B12 blood levels don't correlate with neurological damage. Whatever is going on, I hope you find a dr. who can give you a diagnosis and treatment.

[fbirder in reply to bquoss]

Yes, PA can cause peripheral neuropathy. But it's not the only cause. Indeed, it's not even the most common cause (that would be diabetes).

Assuming it is caused by a B12 deficiency is not a good idea as it may delay treating the real cause. Of course, if you have a diagnosed B12 (or folate) deficiency then treat it and hope the neuropathy goes away.

But it's a good idea to get other possibilities checked out. For instance, some people read that a B12 deficiency means you need all the other B vitamins supplemented. And some of them will subscribe to the 'if some is good, more is better' doctrine. Then they find that the high levels of B6 they are consuming are actually causing their neuropathy.

So treat diagnosed deficiencies, get a referral, be tested and see if they can figure it out.

Oh, and don't do what I did and believe that gluten is the cause. I tortured myself for 6 weeks not being able to eat real bread or drink real beer. Only for my neurologist to tell me that the whole idea was laughable.

[BigCatFreak]

I found a chiropractor who specializes in pn. It's a 90 day program that includes specialized supplements, weekly in office treatments of various types, tens therapy every night, far infrared boot treatment every night, paleo diet & I had to quit smoking cold turkey. All good changes for me so far because I already notice a difference in my headaches & stomach issues & I've lost 8 pounds. I'm only a few weeks in so no huge change in my pn yet but I am hopeful!!! He is also the only doc who would check for related thyroid issues by running ALL the blood tests including antibodies that would indicate Hoshimotoes (which I don't have thank goodness). He said my pn is borderline severe but he thinks the changes and treatments will help the following I am dealing with: pn, ibs, migraines/daily headaches, plantar fasciitis, chronic fatigue, the lower back issues I've had for at least 20 years & GERD. I will post again after the 90 days & I will hopefully have some good news to report!

[MiamiBoy]

I was diagnosed with a carcinoid 12 years ago. The same syndrome that causes gastric carcinoids also causes pernicious anemia. Somehow, my PCP back in 2011 didn't connect the "B-12 deficiency" with the causes of carcinoids, but probably because they are so rare, My current PCP diagnosed me with pernicious anemia the first month I saw him, so by 2015, the so-called 'deficiency' had become full blown pernicious anemia. Long story short, for many years (decades?), I suffered from foot, ankle & lower leg muscle cramps and pain. I tried everything to little avail. Suddenly, the cramps & pain disappeared but almost simultaneously, the same foot/ankle/legs trio have suffered from burning and tingling. One more thing: I have restless leg syndrome.

Apparently, all 3: - leg & foot pain and cramps, burning & tingling & restless legs - are all interrelated and at least two - pain/cramps & burning/tingling - are symptoms of peripheral neuropathy, so I am surmising that I have suffered from B12 deficiency & pernicious anemia for probably a decade or more, and all the symptoms involving my legs that I've complained of over the years all stem for the same common source: Peripheral Neuropathy caused by Pernicious Anemia. This is self-diagnosis, BTW: My PCP is on vacation so I can't run my theory by him but I am treating the neuropathy with Gabapentin (aka Neurontin and also Gralise) & with Cymbalta. So far, so good: It's only been 3 days but the neuropathy symptoms have decreased by 95%.

Prior to trying Gabapentin, I took Lyrica for 4 weeks and it worked magic but I gained a half-pound every single day for those four weeks so I had to quit. YMMV so you may be one of the lucky majority who don't gain weight.

[fbirder in reply to MiamiBoy]

What did they do about your gastric carcinoids? I, too, have these and my treatment is to have them looked at once a year with a gastroscopy.

I also have a neuropathy, but not one caused by my PA. I use gabapentin to keep the pain at a bearable level. Some nights the little gremlin with the red-hot needle starts jabbing it into my ankle. Those nights I need codeine to sleep. But those nights have reduced in frequency since I started on alpha-lipoic acid (600 mg twice a day).

[terrybraden]

Hi grassdogg

I had bodily neuropathy. It was so bad that I couldn't feel the top of my head when I used a curling iron. (I burned myself), had oral numbness, (I wore my dental appliance all day because I didn't want to bite myself). I could cut myself and I wouldn't feel it. I could pinch myself and I wouldn't feel it. I had a blister on my foot and I couldn't feel it either. I had no idea at that time that it was a severe B12 deficiency. I have had an MRI which didn't show anything out of the ordinary. I don't have diabetes, but I do have a genetic tendency to be diabetic, (although I've been told that "genetics loads the gun, but lifestyle pulls the trigger"). There's studies out that you can change your genetics on the cellular level. (Epigenetics).I have been borderline and been able to bring my sugars down.

I was so bad and so weak I used a wheel chair. For support I used a neck and body brace. I started having symptoms of numbness and went to the emergency. Because I have a diagnosis of "Bipolar" the Dr. asked me when I'd last seen my psychiatrist! They didn't think to check my B12 status at that time. I had tried Gabapentin and Lyrica and neither one of them worked, a long time before this happened.

Since then, I am glad to say that with supplementation with transdermal patches and sublingual B12, I no longer need any of the above. I have changed my diet, because I was clearly not absorbing my B12 on the diet I was on. I don't eat gluten or dairy. I use turmeric as an anti-inflammatory for arthritis, plus I try to avoid irritants like the night shade vegetables. (for some people it really aggravates it). The neurologist I saw recommended magnesium and riboflavin for a headache, and it works for my restless legs too.

Sorry to go on, but mine is a story of success and perseverance. It's taken about a year and a half to recover being diligent with my diet, supplementation, etc. I believe, that if your body is given the right things to supply it's need, it will heal itself.

[cantstopit in reply to terrybraden]

hey did u have weakness? I cant walk more than a few mins and that test can I do to see if its permanent damagE?