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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Well, since the Dr's weren't very helpful, this info can't be any worse.........I just found a book for myself..........Neuropathy Reversed, by Stephanie J. chaney $ thomas A Chaney DC
Regardless of what is or isn't the diagnosis, since the Dr's can't really be sure of, this book just might have a little help for you. The one thing in the book, i have never heard of, but found interesting is called REBUILDER..........You can use it to attach to the bottom of each foot, and it travels sort of like going up one leg, and i guess going to the other leg and traveling back down, and is supposed to help with rebuilding the weakness legs have..........You can check out the website at Rebuilder Medical .com.......i think that is right............Regardless of what diagnosis you may or may not have, if this can actually help rebuild your legs strength, i think it might be worthwhile to buy the book, and check out the Rebuilder. I guess altho it is a Tens unit, it is Different, as it has a lower frequency, and safer to use then the normal Tens unit. sorry i can't explain this very well, but at this point, a few bucks to buy the book, with the info might be a little bit of help..........you do need a prescription for this unit (other Tens units you can buy all over the place , so this one must be a little more medically ...helpful) If none of your Dr;s would write a prescription for it, you can call the company and talk to them, I think they will find a way to make it happen................Worse scenario, none of them will write a prescription, well then, what I would do, if i really wanted to use the unit 300............if see a Naturopath, or maybe possibly a chiropractor, and one of them would possibly write a script for you, if you take in the book so they can get a glimpse of what you are looking for........Let me know if you do get the book, and if the info might be the right path for you........
I'm not from the US, so it's not available in my country. Also, I have a tens unit but that didn't help at all. I honestly don't know what might help me.
What is worse is sitting for too long. Then the tingling and numbness set in. I find I have to walk a balance between walkng, standing and sitting. It seems like our conditions are not given much priority or focus in the land of neurology,
The ABI and TBI results are normal. The podatrist is yet to see the results and suggest the next step...
Very true. On TV you see lots of medications being advertised all the time for various diseases. But we never hear neuropathy being even mentioned.
ABI refers to ankle brachial index, i'm not sure what tbi is. would u care to explain?
I don't have numbness, so i can feel every sensation. it's just the pain, burning and pins and needles.
Agreed. We are a forgotten group. But I think I read that there are over 8 million of us out there. That is why this support group is so vital. Also, we must try to stay positive--stress is a destroyer.
Toe Brachial Index - ratio of Toe Systolic Pressure to Arm Systolic Pressure computed for each toe.
I am on my own little mission to help my leg weakness. But, I am not in pain, yet. And mine is very minor compared to yours. but, if i find anything that helps my legs and feet start to feel normal, again, i will let you know. I knew castor oil packs helped with some, medical problems, but i got another book on it, and the people told of soooo many problems that the dr.s said they needed surgery, they used the packs, and from a couple weeks, to 4 months of using packs , and they were healed. some were like 3 days using, and 4 days off, some did packs differently, but i was so amazed of how many cured themselves, so, in the next 20 minutes, i will be applying a pack around one of my legs, just to see if anything will happen. I live alone, so i can look as "goofy" as i want to, with experimenting. a few yrs ago, my friend had a burn/cut on his hand and some flesh was gone. in the hospital 2 dr.s said he needed a skin graft. I applied a castor oil pack (the golden color oil) around his hand at 4 in the evening, the next morning i unwrapped his hand at 10 am, and it was 95% healed, the next day, it was back to normal. So it can do amazing things. Lets see if it will do anything for my legs. If so, i'm sure it will take a few treatments. Worse that can happen..........is nothing .............will let you know if i get lucky....There is something out there........it's just so hard finding the solution........