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?

Liked by Dee

@ealanddtc

I am a caregiver for a man who has the same diagnosis. We have been trying to receive help from doctors for 8 years now. We have found that ALL DOCTORS ARE NOT CREATED EQUAL. We have to check out several doctors of the same specialty to find one willing to try to help. We have been to every specialty. We tried spinal cord stimulator trial with no good results. We had treatment by a Chiropractic doctor for 6 months last summer. My friend had lazer treatment, red light, scrambler machine from Germany, special vitamins to mix and drink, and 6 hours a day on machines that help stimulate blood flow and oxygen in his feet, legs and hands. We ate organic food with no sugar or white flour. No relief from his acute pain. I have researched for 8 years and tried anything that sounds reasonable. My friend is light headed. He finds it difficult to stand on a ladder. When he stands from a seated position, he will sometimes fall back. He is light headed. I had the test completed on DNA from 123and me. They give medical information that has been helpful but know that you must spend several weeks understanding and researching what they say because of medical terms. Where both parents give the same gene, I found some leads to check out. He is being treated by a Neurologist now who is exploring B-6 toxicity and has ordered a spinal tap to check a protein imbalance. He will have this done ASAP because the doctor indicated that this can be treated with good results and sometimes causes neuropathy. This is the first doctor who will test for this and offers hope. My research showed that we needed these tests last year but could not get a doctor to test for this.. Some doctors have given up hope of ever having a cure and just want to offer pain medication. Keep searching and find the right doctor. Good luck to you.

Jump to this post

@ealanddtc – since you mentioned being a caregiver, I wanted to encourage you to check out the Connect Caregivers group when you have a moment https://connect.mayoclinic.org/group/caregivers/. It may have some topics of interest to you.

When will your friend's spinal tap take place, and when do you hope to have results?

REPLY
@ealanddtc

I am a caregiver for a man who has the same diagnosis. We have been trying to receive help from doctors for 8 years now. We have found that ALL DOCTORS ARE NOT CREATED EQUAL. We have to check out several doctors of the same specialty to find one willing to try to help. We have been to every specialty. We tried spinal cord stimulator trial with no good results. We had treatment by a Chiropractic doctor for 6 months last summer. My friend had lazer treatment, red light, scrambler machine from Germany, special vitamins to mix and drink, and 6 hours a day on machines that help stimulate blood flow and oxygen in his feet, legs and hands. We ate organic food with no sugar or white flour. No relief from his acute pain. I have researched for 8 years and tried anything that sounds reasonable. My friend is light headed. He finds it difficult to stand on a ladder. When he stands from a seated position, he will sometimes fall back. He is light headed. I had the test completed on DNA from 123and me. They give medical information that has been helpful but know that you must spend several weeks understanding and researching what they say because of medical terms. Where both parents give the same gene, I found some leads to check out. He is being treated by a Neurologist now who is exploring B-6 toxicity and has ordered a spinal tap to check a protein imbalance. He will have this done ASAP because the doctor indicated that this can be treated with good results and sometimes causes neuropathy. This is the first doctor who will test for this and offers hope. My research showed that we needed these tests last year but could not get a doctor to test for this.. Some doctors have given up hope of ever having a cure and just want to offer pain medication. Keep searching and find the right doctor. Good luck to you.

Jump to this post

Did the Scrambler machine help at all? I was thinking of trying it. You sound so diligent in trying so many things. It is exhausting, and an absolute quest. My best to you in your search. Lori Renee

Liked by Dee

REPLY
@lorirenee1

Did the Scrambler machine help at all? I was thinking of trying it. You sound so diligent in trying so many things. It is exhausting, and an absolute quest. My best to you in your search. Lori Renee

Jump to this post

It did not help me, but pain is not my issue. It does seem to help most people, but there are not many places doing it.

Liked by Dee

REPLY
@cbcbasket

It did not help me, but pain is not my issue. It does seem to help most people, but there are not many places doing it.

Jump to this post

Now I am totally confused. Why did you do the Scrambler if pain was not your issue? I thought that was the reason people did it. What did not work for you and the Scrambler machine? I do have access to the machine, and was thinking of using it for very painful foot neuropathy. Any info would be very much appreciated. Lori Renee

Liked by Dee

REPLY
@lorirenee1

Now I am totally confused. Why did you do the Scrambler if pain was not your issue? I thought that was the reason people did it. What did not work for you and the Scrambler machine? I do have access to the machine, and was thinking of using it for very painful foot neuropathy. Any info would be very much appreciated. Lori Renee

Jump to this post

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!

REPLY

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.

REPLY
@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!

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

Liked by Dee

REPLY
@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

Jump to this post

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

REPLY
Please login or register to post a reply.