1. < Neuropathy

Idiopathic neuropathy and dizziness.

Posted by judypall @judypall, Mar 10, 2019

I have been diagnosed with idiopathic neuropathy. Came on suddenly 8 months ago. The last 8 months have been many doctors appts to find no cause. I also just do not feel well. Dizzy like.
Head feels heavy and just not right! Not one doctor can answer that. I really feel like there is something going on in my body but no one can figure it out! It’s seems like neurologist came up with the idiopathic name since it can’t be figured out. I am only 53 and have otherwise been very healthy and active, Life has sure changed. Anyone else feel dizzy? Feel generally bad?

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

judypall | @judypall | Mar 14, 2019

So I went to local chiropractor that took xrays of my back. When I came back to get the results he said that my spine was out of alignment and needed adjusted. (I have already had an MRI with an orthopedic dr. Which was fine.) Along with take home red light therapy and a rebuilder therapy knee strap. Three months of therapy for $6433. And of course insurance doesn’t cover this. The doctor sounds so convincing that he can help. Has anyone had any luck with treatment of this kind? Pain is an awful thing and I want to try anything for it to go away! But I don’t want to throw my money and time away.

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1 reply
lorirenee1 | @lorirenee1 | Mar 14, 2019
In reply to @cbcbasket "I read articles about it, some of which suggested it might help with other symptoms, so..." + (show)
@cbcbasket

I read articles about it, some of which suggested it might help with other symptoms, so I contacted Dr. Thomas Smith at Johns-Hopkins. He thought it was worth a shot, so he referred me to Dr. Stephen D’Amato, who has offices in Providence and Bonita Springs, FL. I went to Florida. Dr. Smith said if it didn’t help by day four it was not going to. It didn’t.
Everything I read said it does help with pain, so if you have access give it a shot!

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Thanks so much for getting back to me! I am going to do a bit more research, and I am pretty sure I will be doing it. Sorry it did not work for you. At least you tried! Lori R.

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cbcbasket | @cbcbasket | Mar 15, 2019
In reply to @judypall "So I went to local chiropractor that took xrays of my back. When I came back..." + (show)
@judypall

So I went to local chiropractor that took xrays of my back. When I came back to get the results he said that my spine was out of alignment and needed adjusted. (I have already had an MRI with an orthopedic dr. Which was fine.) Along with take home red light therapy and a rebuilder therapy knee strap. Three months of therapy for $6433. And of course insurance doesn’t cover this. The doctor sounds so convincing that he can help. Has anyone had any luck with treatment of this kind? Pain is an awful thing and I want to try anything for it to go away! But I don’t want to throw my money and time away.

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If an orthpedic told you, after an MRI, that it looked fine, do NOT go to a chiropractor who tells you your spine is out of alignment. If you needed therapy wouldn't the doctor have told you that?
I tried red light. It did nothing for me.

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dckuke | @dckuke | Mar 16, 2019
In reply to @lois6524 "usually neuropathy is NOT associated with dizziness -- dizziness can come from a lot of things:..." + (show)
@lois6524

usually neuropathy is NOT associated with dizziness -- dizziness can come from a lot of things: first thing: does the dizziness make it feel like the room is spinning, or just a dizzy feeling in the head -- my suggestion would be that your ear crystals have moved out of the canals where they are supposed to be -- fortunately my doctor picked up on this, and had me visit a vestibular therapist (in the PT department), and after 6 treatments, she got them back where they are supposed to be -- but the symptoms you describe, sound exactly like mine -- hope this information helps

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With severe neuropathy of feet, ankle and leg, the only dizziness I have is only disbalance from numb feet/toes.

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crazyteacher | @crazyteacher | Mar 12, 2021

I have the same head heaviness. I wish I knew. I’m trying to get into Mayo but I doubt they will take me. I’m 70 and on Medicare.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2021
In reply to @crazyteacher "I have the same head heaviness. I wish I knew. I’m trying to get into Mayo..." + (show)
@crazyteacher

I have the same head heaviness. I wish I knew. I’m trying to get into Mayo but I doubt they will take me. I’m 70 and on Medicare.

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Hello @crazyteacher, Welcome to Connect. Sorry to hear you also have a feeling of head heaviness. You mentioned you are trying to get an appointment at Mayo Clinic. Have you been diagnosed with a particular neuropathy or condition?

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crazyteacher | @crazyteacher | Mar 12, 2021

I had an EMG test and nerve conduction test and those I passed. The neurologist said that I probably have SFN but no other tests were done. Do no definite diagnosis. That’s way I need to get into Mayo.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2021
In reply to @crazyteacher "I had an EMG test and nerve conduction test and those I passed. The neurologist said..." + (show)
@crazyteacher

I had an EMG test and nerve conduction test and those I passed. The neurologist said that I probably have SFN but no other tests were done. Do no definite diagnosis. That’s way I need to get into Mayo.

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@crazyteacher - Here are few links that you may find helpful for making your first appointment with Mayo Clinic.

– Getting your first appointment: https://connect.mayoclinic.org/discussion/getting-your-first-appointment/
– Evaluation Appts: https://connect.mayoclinic.org/discussion/evaluation-appts/
– Tips for first Mayo visit: https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

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1 reply
crazyteacher | @crazyteacher | Mar 12, 2021
In reply to @johnbishop "@crazyteacher - Here are few links that you may find helpful for making your first appointment..." + (show)
@johnbishop

@crazyteacher - Here are few links that you may find helpful for making your first appointment with Mayo Clinic.

– Getting your first appointment: https://connect.mayoclinic.org/discussion/getting-your-first-appointment/
– Evaluation Appts: https://connect.mayoclinic.org/discussion/evaluation-appts/
– Tips for first Mayo visit: https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

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My Doctor sent a referral again to Mayo. We tried in July and I was refused.

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gbny1224 | @gbny1224 | Apr 9, 2022

My first symptom was lightheadedness a month later my feet began to burn. The doctor suggested vertigo but that's not the same as lightheadedness. When I moved my head I didn't get dizzy. It just came out of nowhere like a buzz from a shot of whiskey or my first cigarette Just did an emg waiting for the results. I'm 54

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