Struggling to get a diagonosis

Posted by pedro555 @pedro555, Nov 25, 2022

Hi,

I'm a 30 year old male, and I'm a bit scared about my own health, so I thought I'd make this post. For about 5 months, I have had a distinct burning/slight tingling that runs down my right leg. My inner thigh often burns and feels warm, while the rest of my leg is characterized by a slight tingling that varies in degree, and sometimes small spasms. There is a distinct spot in the center of the tibia, in which the symptoms seem to radiate from. There is no noticeable pain, but sometimes it feels like this localized region is "throbbing", if that makes sense. I feel this on the very front of my tibia.

There are no movement restrictions, I've been eating well and feel okay, I can walk and run normally, weight is normal (if anything, I think I've gained a little bit of weight lately). There is mostly next to no back pain, though sometimes I do feel just a little bit the right side, and in one occasion I had a few spams around the area. I think it's got midly worse over time? Can't really tell, but sometimes I do get weeks in which I don't feel much at all, and then sometimes it's really back to bother me.

I visited the doctor a couple months back, which he asked me for two spine MRIs (dorsal spine and lumbar), and an electroneuromyography. All these exams turned out to nothing, though the doctor raised concerns with the electroneuromyography exam (something about needs to be redone, or something). One thing the doctor did mention is that there is maybe some slight swelling of my affected leg (picture attached). This is more noticeable when I put on this pair of jeans that is slightly tight around the calves, and the right side definitely feels tighter. Doesn't look like edema, though. My right foot definitely doesn't feel bloated and the there's no apparent excess fluid trapped in it.

I've had random episodes of having leg crambs in my right leg for many years now, if I moved it a little on the wrong way sometimes I'd get a cramp. But again, not sure if this is related.

Since this is lasting for long enough, and it's had some impact on my quality of life, at this point I'm concerned it might be something more serious. My knowledge of medicine is very limited, but it's easy to get freaked out when I fill in a symptom checker and it gives me ostheosarcoma. The doctor I was seeing did mention there was not much point in imaging the right leg itself, as it's most likely something nerve-related.

I wonder if people could point me in a few directions, e.g. the type of doctor I could be seeking out from now on, what my case sounds like, perhaps a few at-home relief strategies I could try out. I will be more active in seeking care from now on.

Any help is appreciated. Thanks!

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Nov 28, 2022

Hello @pedro555, I would like to add my welcome to Connect along with the other members in this discussion. It can be difficult to not get any answers after having a lot of different tests done and seeing multiple doctors. It's also a little scary when running symptom checkers and searching with Dr. Google. I'm not sure if it's an option or not but have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic? The benefit for this type of healthcare facility is they most all use a multidisciplinary team approach as described in the following article.

Mayo Clinic: multidisciplinary teamwork, physician-led governance, and patient-centered culture drive world-class health care
– https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101537958-pdf

lorilee13 | @lorilee13 | Nov 28, 2022

In reply to @badboybubby "Im starting to wonder this also?, if so where do we go from here??? Does it..." + (show)

@badboybubby

There’s a website I found helpful react19 and also a Facebook group for The vaccination injured.

There’s research being done, but so far not really any help for the vaccination injured at this point 😞

Hang in there and hopefully all of us with new strange neurological, muscle pain, weakness, numbness, and fatigue with hopefully get help for!

badboybubby | @badboybubby | Nov 28, 2022

In reply to @lorilee13 "@badboybubby There’s a website I found helpful react19 and also a Facebook group for The vaccination..." + (show)

Thank you I’ll look up the group.

kdallen | @kdallen | Dec 3, 2022

Hello,

Are you seeing a neurologist yet ? I will say that I get limited help for the neurology professionals I see. I get the most help from my gp. Don’t give up, keep looking for a Dr. That will listen. The bottom line- they rule out what they consider “serious” issues them once they diagnose neuropathy they can only treat the symptoms. Unless you are diabetic they is no efforts made to determine what causes the neuropathy. So- keep looking for a doc who listens to you. You might also see if you can get a pain management referral.

kenc | @kenc | Dec 4, 2022

The quest for treatment is sometimes frustrating and not always rewarding. If you haven't, you may want to locate a good primary doctor. The best ones I found are on major in-hospital clinician staff. The doctor may admit you to the hospital where you can be examined by a team of staff of specialists, where hopefully you can receive a beneficial diagnosis.

anomad | @anomad | Dec 4, 2022

I am an old athlete . Running marathons and triathlons when I was younger . Now 75 with same symptoms as you . I am thinking I may have Piriformis Syndrome ?

windsorchris | @windsorchris | Dec 5, 2022

Well...when we get old (75) we wear out. I had a doc who said 100% of us will develop neuropathy if we get old enough. Not trying to diminish the ugly and painful reality of neuropathy and in my case, 6 years post diagnosis idiopathic polyneuropathy my main symptoms are progressive numbness from toes to calves with tolerable other stuff. It took several years to accept...it is me now and I gotta adjust. I take THC to sleep, wear HOKAS, get pedicures, and most importantly, do whatever I can to be active i.e. walking, doing house work.....whatever I can to stay relevant to myself and others. It sucks...it really does and I know I sound like some kind of "what me worry" character but it took several years of coming to terms with it all to get to this point. I have great empathy for those with much more severe symptoms and yes, I am terrified that it may go to those levels but "one day at a time."

mayofeb2020 | @mayofeb2020 | Dec 5, 2022

@pedro555. Did any doctor you go to refer you to get some physical therapy? Find a good one. They may be able to help you. I am very lucky to have found one, and she has been helping me alot because she knows my body inside out. Unfortunately they don't take my insurance, so I have to pay out of my own pocket. I get a full hour of kneading, prodding, stretching by a therapist, not some assistant. If you can find a good one, it's worth the money.

badboybubby | @badboybubby | Dec 5, 2022

In reply to @kdallen "Hello, Are you seeing a neurologist yet ? I will say that I get limited help..." + (show)

Hi there not as yet, Id imagine a good wait here to see one. I’ve read as you said some maybe of no help, you’d think specialists who specialise in nerves would figure things out quickly. I do have a podiatrist appointment Friday maybe shed some light on things. The burning has settled a good deal the last 4 days, no complaints there. But i am not going to google to much, it starts that health anxiety on a roll. I am still going with Stenosis and disc bulges till i know better. Thanks 😀

casey1329 | @casey1329 | Dec 6, 2022

My husband had health issues and we dad to go to 4 neurologists before we got any real answers. The best was found at a well known hospital in a large city...good luck !