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.

I'll try to keep this brief. In March my 72 yr old husband fell and couldn't get up. We went to the ER and they said DVT. We treated it and he was fine for a month and then one morning he couldn't move his legs to get out of bed. He had no symptoms other than elevated inflammation markers. We went to another hospital where they admitted him & tested him for 6 days, diagnosis was Parkinson's. Took the medication for a month but we felt the diagnosis was wrong. So we got a second opinion. I suggested Alcoholic Myopathy. The neurologist didn't think so because blood work and liver were fine, plus no withdrawal symptoms. She thought it was C.I.D.P. Did 3 rounds of infusions and then went for a 3 rd opinion. Doctor said he didn't know. 4th doctor, from Dublin, said stop drinking and you'll be fine. So far so good, but it took 4 neurologists with 4 different diagnosis' to get here!

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My husband had balance and falling issues. He is 72, avg. weight and in general his health is good. Well, it too 4 neurologist to get what we think is the right answer. The first said Parkinson's, second said rare genetic disease, third said he didn't know. The fourth said distal axonal neuropathy and to stop drinking, eat right & exercise. Well he followed the doctor's advice and feels great. My point is, sometimes you have to keep trying different doctors till you find the right one. I did a lot of research on the computer to guide us…good luck !

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I would see a neurologist. There are lots of tests they can run including bloodwork. Good luck.

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Please find a neurologist that deals specifically with Neuropathy. They will know and they will know what tests to do. This will save you from going to neurologist to neurologist. Even if you have to travel to find one it will give you the correct answers.
I hope it goes well with you.

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@pedro555

Have you been vaccinated for Covid?

I’ve experienced a lot of the same symptoms. Muscle spasms, burning and cramping. Along with many other symptoms.

I’ve seen many specialists and I have been told the vaccination caused my neuropathy, pain, numbness, and joint pain.

Certainly I hope a neurologist should be able to help you.

Best of luck!

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@lorilee13

@pedro555

Have you been vaccinated for Covid?

I’ve experienced a lot of the same symptoms. Muscle spasms, burning and cramping. Along with many other symptoms.

I’ve seen many specialists and I have been told the vaccination caused my neuropathy, pain, numbness, and joint pain.

Certainly I hope a neurologist should be able to help you.

Best of luck!

Jump to this post

I would change doctors immediately.

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@casey1329

My husband had balance and falling issues. He is 72, avg. weight and in general his health is good. Well, it too 4 neurologist to get what we think is the right answer. The first said Parkinson's, second said rare genetic disease, third said he didn't know. The fourth said distal axonal neuropathy and to stop drinking, eat right & exercise. Well he followed the doctor's advice and feels great. My point is, sometimes you have to keep trying different doctors till you find the right one. I did a lot of research on the computer to guide us…good luck !

Jump to this post

Having to try different doctors is a very sad statement

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Go to Mayo Clinic or other similar agencies for a more definitive explanation.

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pedro555 – In your post, I stopped and paused when I saw those words you wrote – it's had some impact on my quality of life. In my opinion, that's when something needs to happen, it's a turning [point and at your age, you need to take all of this seriously and it looks like you know that. I agree with the post to go to Mayo and there are other high-level institutions, depending on where you live. Don't jump to conclusions on what is on the internet. Places like Mayo will do their best to hammer down on what's going on and give you some kind of answers. Good luck!

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@lorilee13

@pedro555

Have you been vaccinated for Covid?

I’ve experienced a lot of the same symptoms. Muscle spasms, burning and cramping. Along with many other symptoms.

I’ve seen many specialists and I have been told the vaccination caused my neuropathy, pain, numbness, and joint pain.

Certainly I hope a neurologist should be able to help you.

Best of luck!

Jump to this post

Im starting to wonder this also?, if so where do we go from here??? Does it go away

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