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 returned home from the US nearly two years ago, and I've noticed that appointments in all the hospitals I've been to are quite far apart. I'll explore other options elsewhere. Thanks !
Same symptoms here. Have you been worked up for lumbo-sacral spinal stenosis? It can cause those very symptoms, without any back pain at all.
lumbo-sacral spinal stenosis wasn't found in MRI. What's your history and how was it diagnosed?
Could you tell me what happened after your car accident? What were your symptoms and diagnosis?
Hi everyone- I'm new to this board. I have been suffering intense right leg pain for 2 weeks, it started in my upper outer thigh and made it impossible for me to walk unless I crouched down and put a lot of pressure on my right thigh. In the next day it progressed down my right lower leg, on the outside, very painful, constant. Icing helped numb it. Then my lower leg went numb (on the front) but still intense pain in both upper and lower legs. MRI showed widespread degeneration and stenosis in all lumbar vertebrae which my GP was was ago normal, and yet I have no pain in my lower back (I am 76, have been active all my life, have done 3 ironman in my 60s, and more recently have been doing reformer pilates- and swimming and bicycling) . A new chiropractor thought it was compression of the lateral femoral cutaneous nerve, she did some nerve flossing with a blunt steel on my right outer thigh and some point-pressure movement of my leg, plus SI adjustment with drop table (my right SI has been a chronic issue). After, I was able to slowly stand up straight and walk slowly with less pain- but within a couple of hours the pain was back.
Has anyone had similar leg pain with no lower back pain? Can tight muscles cause this nerve compression? It came on out of the blue around noon on July 7, with no triggering activity (I had been swimming earlier that morning).
I had been on a 13 hr plane flight back from Europe on June 10 (thus a month earlier), but had no issues.
I'm trying to see a spine doctor and hope for a steroid injection in the L2-4 area even though I don't have pain there- can femoral nerve pain originate from a compression leaving the spinal column but only manifest pain once it reaches the thigh?
Thanks for reading this- look forward to any insights/ similar experiences.
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2 ReactionsMine happened right after a long flight. What was your diagnosis?
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1 ReactionSee Dr regarding risky blood clot. A ultrasound of leg veins will rule out.
I still havent' been able to see a dr to get a diagnosis! So I'm needing to self-diagnose, hence looking forward to others' thoughts. Apparently a herniated disc can cause leg pain without back pain- but if I have that, why would body work partially(and temporarily) alleviate the pain?
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1 ReactionI'm sorry you've been going through this. Have you had a skin punch biopsy? My neurologist suggested it to rule out Parkinson's (I had many of the symptoms). The results did rule out Parkinson's, but they indicated small fiber neuropathy. As I understand it, SFN doesn't show up in EMGs, which I had had. Now we're trying to find out what has caused the SFN, but at least we have a focus, and the loss of the small nerve fibers explains a lot of the symptoms I've been dealing with over the years (severe pain in various parts of my body, fatigue, rapid heartbeat, etc.).
I live near Johns Hopkins in Baltimore and have been seeing a neurologist at their SFN center. Most doctors aren't familiar this problem, so you need to find the right specialist. I finally got somewhere by going to a neurologist, after years of seeing all kinds of doctors for a "constellation" of symptoms. Neurologists do specialize, though, so it's helpful to search for "small fiber neuropathy specialists near me".
Here are some links that might be helpful. Good luck!
https://my.clevelandclinic.org/health/diseases/17479-small-fiber-neuropathy
Anne Louise Oaklander video on SFN
Good luck!
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3 Reactions@mmmerrimac: This Small Fiber Neuropathy lecture video you shared with us was fantastic. Yes, a little over my head, but I finally had neuropathy explained to me! It makes so much sense, yet the cause-treatment scenario is so complicated. However, I now can understand what is happening in my body when I have neuropathy symptoms. This gives me a tool to help me accept the pain if the latest “cure” doesn’t elevate my discomfort. It’s been said that if you have one autoimmune diagnosis there will be others discovered in your future.
I encourage all peers to take a moment, listen, and compare your symptoms to this new knowledge revealed through this lecture. Old dogs can always learn new things and see with fresh eyes! Thanks again!
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