Help me diagnose

Posted by bbk186 @bbk186, 3 days ago

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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@liloldlady

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........

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How do you apply it to the legs? Would appreciate any pointers.

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there are books on castor oil, which will be much better . But.......when applying anywhere you need...........plastic wrap, to help keep the oil from dripping all over the floor, etc.
then the actual castor oil books, say you need to wrap the flannel 3 layers thick, maybe 4. usually 3 layers.............then you need to saturate the flannel/castor oil. Some say saturate, then wring it out.........well, i saturate, i do NOT wring it out. then after wrapping it wherever i want , i would use something like an ACE bandage to hold it in place. In many cases, books say to then put a heating pad on top. In some cases tho, you do NOT use the heating pad.
........For my leg.........i wanted aprx 12 inches up the leg, so would get a piece of plastic wrap to wrap around the height and width .............i layered a large piece of flannel, which i would have enough to layer the flannel 3 layers deep............then saturate the cloth, lay it on the plastic wrap,, wrap it around the leg...........get whatever type of bandage you have, ACE, or anything that can hold it in place. Safety pins if necessary............However, i did decide to just wrap it around my entire foot instead, because i had more stiff feelings in my feet, and thought if it helps, i would be more aware, because of feeling something . My legs, need to be strengthened, but, i wouldn't really be able to tell as easily, if there was any difference, as i would think wrapping around the legs would take several treatments... After only the one treatment on my foot...........i don't notice any difference from the stiff feeling, but, i didn't really expect a miracle after only one treatment. If you can find the book MIRACLE OIL by David E. Kukor.............there are unbelievable medical problems that were cured , giving me hope that it too, could work on legs... there are other books/pamphlets out there, but NONE have the amazing stories this book has. I got a couple from Amazon, and E Bay, for aprx $8.........since individuals are selling them, they might be gone by now. But thrift books i think still have a couple, but they are $40.......
the one thing i really really want is a Microcurrent device........pre programmed by a Dr., to be used for not only legs, but also for many other problems to. I wouldn't buy one on the internet for only $100 - $300, as I doubt that they would be professionally programmed. and messing with these units, i would want to make sure i get the right frequencies needed, otherwise i could do more harm, then good...........I'm trying to find a Naturopath who already uses one in their practice, hoping i can purchase one from them, programmed for the areas i need............wishful thinking............i just have to keep searching. Microcurrent is safer then a Tens unit. Many books say, you can use a Tens as often as you want............but i always look for Cautions................One book, said, you actually can over do tens, and that could create a problem.............so microcurrent is not as intense............anyway, i still keep searching. today i am going to wrap one knee with the oil. I banged it up a couple of months ago, and it isn't quite back to normal yet, so i' should have....done the oil pack asap, but, i didn't. ....

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My neuropathy came on all of a sudden--after taking two days of methylprednisolone for a sinus infection. The neuropathy is such an annoyance--it just goes on and on--but I don't have actual pain. I find myself having occasional sweats and feel weak. My muscles have wasted. No diagnosis has been given to me other than peripheral neuropathy. I had numerous tests--mainly to rule out cancer as I had dropped weight. This week I am heading to a cardiologist. I ended up in the emergency room two nights ago as I had tightness in my chest but EKG, blood work, lung x-ray and ultrasound of my legs (to check for DVT) all were okay. So what gives? It is beyond frustrating. I do agree that a good diet will probably help to an extent. I am trying to eat clean.

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