Help me diagnose

Posted by bbk186 @bbk186, May 26 6:40am

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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dbamos1945 | @dbamos1945 | Jul 20 5:14pm

See Dr regarding risky blood clot. A ultrasound of leg veins will rule out.

debbyswimmer | @debbyswimmer | Jul 20 7:50pm

In reply to @bbk186 "Mine happened right after a long flight. What was your diagnosis?" + (show)

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?

mmmerrimac | @mmmerrimac | Jul 21 1:10pm

I'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!

dbamos1945 | @dbamos1945 | Jul 21 2:44pm

@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!

bbk186 | @bbk186 | Jul 21 3:18pm

In reply to @mmmerrimac "I'm sorry you've been going through this. Have you had a skin punch biopsy? My neurologist..." + (show)

Skin punch biopsy is not done at any hospital where I live. How is it done? And what do you mean by fatigue symptom? In my case, it feels like my lower legs have run out of all energy. Just my lower legs

loriesco | @loriesco | Jul 22 10:03am

You sound like me when I was beginning my medical journey 25 years ago. 15 years ago, I started having hip replacements and spine surgeries. I went nowhere for 20 years with the neurosurgeon and he gave up and finally sent me to the orthopedic surgeon where I was wheeled into surgery almost immediately. But it was too late. The nerves exiting my spine were already crushed to death and my vertebrae’s actually grafted together. You are probably on your way to Spinal lumbar problems, and there are many things that can be done in the interim. You might need to be at a good pain management doctor where they do facet joint ablation and look at spinal compression and things like that. There can be one little blip on your spine that’s pressing on your nerves Going down your legs to your feet, causing numbness, burning tingling all the rest. Each part of your legs and feet correspond with a nerve root exiting your spine. So it would be best if you went to a doctor and pain management doctor that worked as a team and could give you diagnostic treatments to diagnosed where your issueis originating from.

bbk186 | @bbk186 | Jul 23 5:36am

In reply to @loriesco "You sound like me when I was beginning my medical journey 25 years ago. 15 years..." + (show)

My MRI is normal for the lumbar spine.

mmmerrimac | @mmmerrimac | Jul 23 1:05pm

In reply to @dbamos1945 "@mmmerrimac: This Small Fiber Neuropathy lecture video you shared with us was fantastic. Yes, a little..." + (show)

I love that video! Dr. Oaklander is such a good presenter. I've watched it more than once, and even though I don't understand all the scientific parts, I've learned enough from it to get a sense of how SFN affects my whole body. It's given me a foundation to build on as I work with my doctors to get and accurate diagnosis for all my symptoms. You're right about the possibility of multiple autoimmune diagnoses. That's what I'm trying to nail down now. So much time has been wasted by doctors who can't get past the anxiety as the cause of my symptoms rather than the other way around.

I second your advice about arming ourselves with new knowledge. Doctors don't always have time to discuss the details with their patients. One of the symptoms I'm dealing with is mild cognitive impairment, which makes it hard for me to remember everything I want to ask the doctor about when I have appointments. I now rely on lists/charts/pertinent medical records to jog my memory.

BTW, have you tried low-dose naltrexone for pain? It doesn't work for everyone, but I've had great luck with it.

mmmerrimac | @mmmerrimac | Jul 23 1:53pm

In reply to @bbk186 "Skin punch biopsy is not done at any hospital where I live. How is it done?..." + (show)

My neurologist did the skin punch biopsy in her office. It's actually a fairly simple procedure, and I think it can be done by your primary care doctor if they are familiar with the procedure. Some insurance companies may balk at paying for it, but my doctor was able to get it approved by Medicare before she did the test.

My fatigue manifests mostly in my inability to stay awake, but my legs get very tired too. Small fiber neuropathy can start with the feet and move up the legs—that's been the pattern my numbness and tingling have followed. My biopsy showed that the small fibers had been destroyed in my ankle and were far fewer in the thigh. The YouTube video I mentioned is helpful in understanding how this happens. One thing I learned is to use the word "fatigue" rather than "weak." When doctors test my resistance (pushing back when they push against my arms/legs) it can be pretty firm, but walking or standing is difficult for me.