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!

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@kdallen

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.

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The origin of my neuropathy is having received chemo for breast cancer. It started immediately after about 2 months into it. Not only my feet, but my finger tips also.

I have never complained about this condition but since diagnosis of PMR and taking prednisone I have struggled with terrible body aches, shoulders too. I am now taking prednisone, 4 mg, started out with 15 mg and my rheumologist has been shrinking the dosage but since bringing it down to 3 mg, I just started to hurt again so back up to 4 mg. I don't want to take any more meds than I absolutely have to, and prednisone certainly isn't a drug that I want to continue taking for any length of time.

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@casey1329

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 !

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what was his diagnosis if ok sharing thanks

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Distal sensory axonal polyneuropathy caused by heavy drinking...

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I've finally been diagnosed with Long COVID (had to go to Baylor in Houston to get the diagnosis). This finally pinpoints the reason for my peripheral neuropathy.

The doctor here wanted to pin a diagnosis of alcoholism on me, which I didn't even know because she never talked to me about it. I only discovered this when I requested my medical records, Now, that dx is in my chart and I working with my new doctor to get that removed, as it is not true. My doctor - who is now retiring - took the easy diagnosis route and didn't want to figure this out.

Thanks again, China.

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@txsongbird

I've finally been diagnosed with Long COVID (had to go to Baylor in Houston to get the diagnosis). This finally pinpoints the reason for my peripheral neuropathy.

The doctor here wanted to pin a diagnosis of alcoholism on me, which I didn't even know because she never talked to me about it. I only discovered this when I requested my medical records, Now, that dx is in my chart and I working with my new doctor to get that removed, as it is not true. My doctor - who is now retiring - took the easy diagnosis route and didn't want to figure this out.

Thanks again, China.

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Wow what is the treatment for long Covid? Neuropathy seems anything can bring this thing on. :/.

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