Peripheral neuropathy

Lyrica works well.

 

I have it in my left foot for 20 years and nobody has ever been able to diagnose it. I attempted to use Lyrica and I couldn't stay awake during the day. I've basically resigned myself to living with it and I try to stay as active as possible to minimize the numbness. I find it bothers me most when I'm lying or sitting down.

 

Lyrica/Neurontin and Cymbalta/older tricyclics antidepressants can all work. Stay away from opiates.

 

This. And as your probably aware, there a various causes of peripheral neuropathy. If you have diabetes, more consistent control of your glucose levels can help along with the medications mentioned. Also supplemental B complex vitamins can help with Metanx (folic acid). Thyroid conditions and lower back conditions (lumbar radiculopathy) can also cause it. If you provide a bit more info as to your medical history some here may be able to provide some insight. Good luck.

 

Good advice +1.

Mbn

 

So you were diagnosed a year ago but when did your symptoms actually start? A year ago or much earlier? What were the earliest symptoms?

What vitamins? When and why did you start taking them? How much were you taking?

That may or may not be true - which infections have you actually been screened for? Did anyone in your family suffer from fibromyalgia or similar ailments? Do you physically resemble any of your kinfolk?

I'm not a medical doctor but I was a medical researcher at one early point in my life. IMO, fibromyalgia is simply a description of a frequently-reported collection of symptoms that may be caused by a number of possible "insults" sustained by the patient. If you're just taking medication for fibromyalgia you may alleviate some of these symptoms but you're likely not getting at the cause. Plus, the side effects of medication can make diagnosis of the cause more confusing and difficult.

If I were you, unless my symptoms are otherwise unmanageable, I would focus on determining the cause of the fibromyalgia before embarking on medication. Knowing the cause would greatly help selecting treatment of symptoms as well as treatment of the cause. You need to know the cause to avoid even worse symptoms down the road. IMO, treating symptoms alone is a short term, often risky strategy.

 

Sorry, I misread part of your message.

So where were you living when you were in your 20s and early 30s, before you started having ANY health problems?

You say you had a "hard life", were you in a lot of accidents? Did they involve head or spinal trauma, injury to peripheral nerve function? Do you still have x-ray or MRI records, doctors reports?

BTW, I assume you understand a veinous circulation issue in your leg is likely not directly related to a nervous system problem, but they might both be caused by something else.

IMO, recommended serum levels of vitamins and minerals are just rough guesses based on data collected from a pool of "normal individuals".

The problem with reviewing just one set of blood test results is that the doctor has no baseline to compare the results against. Each person is different so even if the levels may fall within "normal" range, they may actually represent a departure from your normal baseline. For example, if the normal range for 25-Hydroxyvitamin D is 50-125 nmol/L and your test shows 55 nmol/L, it may not actually be normal for you if your actual long term "normal" baseline is 120 nmol/L.

For that matter, the dietary intake for Vit D was shown to have been someone's casual guesswork in the late 1940s, not the result of any educated research. The recent guidelines for Vit D were acknowledge to be wrong and the recommended level was raised... slightly, but are still inexplicably low.

In the case of Vit D some individuals make a lot of it from sunlight but some people don't even if they have the same sunlight exposure. If the person making his own Vit D moved from Arizona to Alaska and didn't watch his diet, he might experience a Vit D deficiency. This is a slightly unusual example but illustrates the dangers of consuming these recommended levels and test results like they are divine truth. They're not.

OTOH, given the serious nature of your symptoms, it would likely take major long term nutritional deficits to account for what you have experienced. All the same, I suggest middle-aged persons to take 1 good quality multivitamin a day, as a modest measure to avoid nutritional problems. If you don't buy fresh foods and cook your own meals you need to be concerned about your diet. Western diets are crap.

I believe the MRI may show up any lesions, plaques, circulation issues and tissue loss in your central nervous tissue; but you still need to identify what may have caused those injuries. If your MRI comes back abnormal it may be worthwhile to check your cerebral spinal fluid for abnormalities, foreign matter or infectious agents.

It is possible for infections to attack peripheral nerves, and eventually cross the blood-brain barrier to the CNS. When a person experiences so many symptoms in so many body systems, one has to ask whether a systemic agent is involved. It could be an immune system breakdown or hormonal problem, a foreign substance like a toxin or an infection. It could also be a hereditary condition so family history of the health of relatives would show that.

If the problems started with an event or an incident, it's helpful to look back at where you were and what you were doing in the months and years just prior to the appearance of the first seemingly-related symptom(s). In that regard, I always request doctors, clinics and hospitals to provide me copies of all tests and radiology data. I maintain my own set of medical records, as close as possible to the original raw data so that meaningful comparisons can be made, even years later, if I experience a related medical concern.

 

My father-in-law has developed neuropathy in his feet / legs (he's not diabetic, but recently diagnosed with Parkinson's) - it is incredibly painful for him. Not sure there is much he can do, but he tries hard to stay off his feet.

It's a shame and I feel very bad for him. Sorry to hear that you struggle with this as well.

 

Tell me, when you wrote "fallen on my face" in this context did you mean you experienced partial facial paralysis? Did you lose muscle tone/control on one side of your face?

Do you mean you had trouble breathing when you laid down to sleep? It kept you up and you had to sit up and consciously move your chest muscles in order to breathe?

What colour was the tint? Imaginary flying objects - were they lights? Are you familiar with "floaters"?

Ask the neurologist if he intends to perform PCR (Polymerase Chain Reaction) analysis for possible tick-borne neurotropic pathogens including Borrelia burgdorferi or any other strain endemic to the US northeast.

BTW, I understand fully what you meant when you said your sharpened reflexes "...throw off the neurologists". Doctors tend to underestimate how much sharper athletes' senses and motor control are compared to the normal standards they test for. You will feel like you are dragging your a$$ but they'll say you tested normal. However, experienced doctors will also admit their tests are only geared to the average patient.

 

Loss of muscle tone for breathing may be caused by a condition called radiculoneuropathy.

A number of pathogens including Lyme bacteria have the ability to infect the peripheral nerves that innervate the trunk of the body. The bacteria can travel down lymphatic system from the site(s) of entry and infect nearby nerve tissue including the ganglia which encompass the nerves that form the dermatomes. When a given dermatome is affected by the pathogen you may experience pain, abnormal sensations or compromised nerve control of underlying muscle like those needed for autonomic breathing action. Polyradiculoneuropathy that interfered with regular breathing have been documented in scientific papers.

Peripheral nervous system manifestations of lyme borreliosis

Radiculoneuropathy - Lyme Disease and Other Infections Transmitted by Ixodes scapularis, An Issue ...

Neuromuscular Disorders in Clinical Practice

Good luck with your upcoming tests.

 

Dave, just briefly after reading this, I agree with Michael - check for Lyme disease. Guillain-Barre is more acute and unlikely, but some other post-viral auto-immune compromise could be going on here. Fibromyalgia is not a diagnosis, it's a word we use when the symptoms don't fit what we can diagnose. You're right about clinicians being driven mad by these things, but that doesn't mean they're not real. Good luck, and keep searching - it's telling that your mother has experienced similar symptoms.

 

Did your doctors confirm the creatine kinase test results? Have you been retested? Lyme disease can cause heart and/or brain tissue injury, so a positive CK is possibly consistent with Lyme.

Which other blood tests are you relying on for diagnosis?

Lab tests for Lyme disease are actually not considered reliable so Lyme disease diagnosis normally rely on a host of other tools like clinical presentation and case history of the patient. This is also why experience and personal skills of the doctors matter. However, if you have reliable lab tests that point to other disease(s), those tests can rule out Lyme disease if they can explain the clinical presentation and case history, especially if the patient's history rule out tick bites.

I suspect the diagnosis of chronic systemic conditions and complex symptoms like yours are often difficult, especially with the passage of time and possible side effects of treatments. However in your case, the fact that your mother has the same symptoms, does provide a helpful avenue for additional investigation. It may indicate you may both be suffering from the same agent - could it be genetic or perhaps an external agent that you were both exposed to? If it is an external agent, is the condition endemic to where you both lived?

As for a possible genetic factor, what is your mother's exact case history and timeline? What about her siblings (your maternal uncles and aunts) who may or may not be living in similar locations, with similar or dissimilar blood types, physiological makeup? How are they faring?

For non-genetic agents/causes, can you correlate your symptoms to clusters of similar cases in your locale, or occupational, lifestyle groups?

 

I'm going to renew this because I just came across this thread. About three months ago my left ankle/foot started to burn and both feet felt feel cold and throbbed. I've seen two different neurologist, I've had exhaustive bloodwork an MRI and other tests and most of which seem like hokum to me and I still have no answers. I'm not diabetic and I don't have any herniations that would cause the problems I'm having. I'm not HIV and I don't have thyroid or vitamin deficiency issues. I've been on lyrica about six weeks with marginal improvement. I've greatly reduced my intake of alcohol and I Reduced my vigorous exercise. I take one half of a minimum dose of Valium a day and on extreme days I take one half of the smallest dose of hydrocodone. I try to sit as little as possible as my problem is definitely somewhat positional in nature. I'll stay with the Lyrica a bit longer and then I'll switch to an anti-depressant or an anti-convulsant as my family doctor recommends. I have much more trust in him than I do the neurologists I've seen. Both my cardiologist and my family doctor are personal friends and they know about my experimentation in my attempts to make this problem more manageable. What I found that works but is certainly not a panacea is more rest, less alcohol, less vigorous exercise, as little sitting as possible, STAYING WARM, and and taking medication judiciously but not shying away from it as necessary. As I said I take one half of the valium midmorning and I allow myself a total of two minimum dose hydrocodone pills that I usually cut in half per week. I'm 58 years old and I have had to deal with a lot of adversity including medical adversity in my life, but this is probably the worst and most mysterious issue that I've ever had to deal with.

 

I've got a similar situation and we're about the same age. Same medical, no issues clean bill of health. Mine started after dinner and last 30- 60 minutes, left foot more than right. Was given lyrica which didn't seem to help at all. Went to specialist and did full body of tests. She suggested get off lyrica and a daily B complex vitamins. Since I started the symtoms went down considerably.

 

My B12 level came back fine from the blood work but my doctor still gave me a B12 shot and I'll get one monthly. Quite honestly I don't hold out much hope that that will help. I'm looking forward to warmer weather because that seems to help. My discomfort does not come and go, it only is more or less intense.