Help me diagnose
Background and symptoms: I've been suffering from lower leg pain in both my legs (from knees to feet) for the past 3 years. The symptoms are mainly extreme pain, fatigue/ exhaustion with activities, and pins and needles and burning sensation most of the time, but no skin psoriasis, swelling, or other physical symptoms. This problem started all of a sudden after a long flight (approximately 8 hrs) on a plane where my seat was mechanically damaged, and I couldn't recline it; the guy in front of me reclined his seat entirely, so I didn't have any space to move my legs properly. I requested him, as well as the air hostess, to change my seat to no avail. The pain started after I got off the plane and increased exponentially as I walked through the airport. Since then, it's been a disaster. I don't have these symptoms anywhere else in my body, not even in my upper legs or anywhere else in my body. Before this flight, I never ever had this type of pain in my life.
Diagnosis so far: My initial treatment was done in the US. US healthcare is crap, but I didn't know until I got a first-hand experience. My dumb primary care provider put me on 200/400 mg Ibuprofen and then switched to acetaminophen of low strength despite my terrible symptoms. He didn't give me any stronger painkillers or local anesthesia despite my thousand requests; they just kept saying that it was an unusual pain throughout all our meetings. After 3 months, he realized that it's getting even worse so he thought it could be nerve issue so he gave me gabapentin and later switched to pregabalin which were also of very very low strength. Later, he told me to take only multivitamins as my reports (by that time, I had done blood tests, urine tests, an MRI of my lower legs and back, and CT angiogram of my legs) were ok. During this entire period, I consulted a few doctors of different specialties, but they said that as the reports are fine, we can't help you. Also, the wait time to schedule any test or appointment is extraordinarily long in the US and it definitely exacerbated my condition. That time my symptoms include-- achy pain, shooting and burning sensation. I couldn't stand for more than 30 minutes at all and couldn't walk for more than 15 minutes without terrible pain.
I came back to my native country after about a year as by that time I was told by my medical care team that I might be able to fly now and since then I consulted a few doctors of different specialties. My physical therapist suggested that the symptoms relate to arterial disease like intermittent claudication but, my test reports are normal. My Ultrasound says 30-40% blood flow reduction in the anterior and posterior tibial artery, but the Vascular surgeon said it's normal. I did the same tests in the US earlier, and the Vascular surgeon in the US said the same thing and also said that apart from the pain, nothing else matches with vascular problems, especially as I don't have any physical appearance similar to vascular disease. I was given Naftidrofuryl oxalate - a vasodilator for 2 months, which didn't abate the pain at all, so I believe it's not a vascular issue. I got all sorts of blood tests (HLA B27, RF factor, C reactive protein, CPK, lactate, uric acid, D-dimer, CBC test, almost any kind of blood test imaginable) and imaging tests(MRI, ultrasound, CT angiogram) done along with nerve tests (EMG and NCS). These tests have been done routinely and multiple times in different hospitals in 3 different countries, and the results are fine every time. The only test I couldn't get done is called myositis metabolic panel because it's not available where I'm now. My neurologist also said that it's not a nerve issue. Recently, 2 MRIs were done by my Rheumatologist and he found just a slight inflammation in my calves but the other MRI suggests that I have pretty good inflammation in my tendon and joint in my foot. My rheumatologist now says that it's peripheral spondylo arthritis. According to him, peripheral spondylo arthritis is observed through ultrasound or imaging tests rather than blood tests, hence nothing shows up in my blood tests reports. I asked him if it could be due to any infection but he denied that and said if it were due to any infection, then it would be found on a blood test by now. I know that ultrasound is a subjective thing that depends on the person who's performing it(technologist/doctor) but I'm just so confused and skeptical. I still have those symptoms- achy pain, burning sensation. Although sciatica is mostly found in one leg but I have these symptoms in both legs. I took pregabalin for 6 months but it dedn't help me at all. My EMG and NCS are also fine. My MRI which I got done here in my country suggests I have mild sacroilitis which I've attached here though the doctors said it's fine and not necessarily a dangerous sign.
I find it very weird that due to a bad flight, I developed arthritis/ sciatica all on a sudden. Does anyone relate to my symptoms? Has anyone ever had a similar experience? I need some suggestions, please!
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I can relate to the mysteriousness of your symptoms. Here I am without any diagnosis. They say to avoid stress when dealing with autoimmunity;however, I find it stressful that doctors cannot figure out how I ended up with peripheral neuropathy. I do not fall into any of the categories i.e. diabetes or others. I had a bad sinus infection and took two days worth of methylprednisolone and voila--here I am with tingling, numbness and wobbly legs. My muscle tone is also messed up. Seeing doctors is difficult--more stress--and no resolution. My sympathies and support to those like me who are on a merry-go-round.
Methyl Prednisone caused neuropathy?? Did you get any tests done?
My case is kind of similar. All started around one day one and half years ago I walked about 18000 steps in preparation for a house warming of a family member. Started with cramps and then slowly pains in the shin and foot areas. Unable to stand or walk after getting up in the morning after painful night in spite of Pregabalin . All possible tests came negative after seeing all possible specialists. Now I am seeing a podiatrist who ordered tests called ABI and TBI to test blood pressure in the ankle and in all the toes. Waiting for results. I totally understand your pain and frustration….
I have itching and pain in the skin on my face. It started with my eyelids and now is perfect oultine of my face, no rash. Someone mentiond that it might be related to my neuropathy. Has anyone ever heard of something like this?
My ABI is normal . Please let me know what he tells you.
I had several blood tests done by a neurologist and some disorders were ruled out. I also had a brain MRI--negative. I had a CT scan of my abdomen and pelvis and nothing was found. I also had a vaginal ultrasound of my uterus and ovaries--again negative. The second and final night that I took the methylprednisolone I experienced tingling and burning in my legs and arms along with heart palpitations. Never before had I had those sensations. My neuropathy developed shortly thereafter.
I have many of the same symptoms as you describe. After a year of medical study from three different fields of Dr.s I have been diagnosed with: Idiopathic progressive polyneuropathy. That being said to me it means that they don't know how I got it or what if anything to do but treat symptoms with drugs. My drugs of choice are gabapentin 1200mg, and low dose tramadol 1/2 of a 50 mg in the afternoon. I have spot pain on my legs, buttocks and arms. I use two other products for those. magnalife nerve relief roll-on otc. And a 5% lidocaine cream ( Its a hemorrhoidal relief product). I have not tried the lidocaine patches yet. I also dissolve 1/3 of a zolpidem as I go to bed under my tongue. Works wonders for my sleep. Stay away from the ads for PN. cures. Some others get some relief from a few creams of herbal stuff so I read. I am working with a homeopathy acquaintance with a few of his concoctions. Exercise if you can and work on balance by standing on one foot anytime you think of it. I have a stationary bike that is good for leg work. Share anything that works for you to us please.
My lower legs feel extremely exhausted/ fatigued after running or walking. Do you feel the same?
I have tried amitriptyline pregabalin gabapentin ibuprofen etc nothing helps. I got a shot of Humira today from my rheumatologist. I'll let you know.
I experience some fatigue after walking. I think the gabapentin has a dampening effect on me. My feet start to burn at some point and my calves after that. Its the burn that gets me the most. I am 78.