Idiopathic neuropathy and dizziness.
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 You may want to consider if you have any alignment problems in your cervical spine. Spine problems and injuries can cause vertigo, and muscle spasms can move vertebrae by twisting or tilting them out of alignment, and that can affect blood circulation to the brain. Bow Hunter's Syndrome is an example of that. A physical therapist who treats spine surgery patients might be a good resource. I had these issues because of my spine condition, and surgery for cervical stenosis resolved all of that for me. I did have some episodes of sudden vertigo and my therapist was able to realign my spine and stop the dizziness prior to my spine surgery.
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.
Seven months ago I began to feel sweaty and clammy all over my entire body, all the time. Sometimes at night when I am very still I do not feel sweaty and clammy, but it returns as soon as I begin to move around. I have had a stress heart attack and suffered a TBI in a car accident four years ago, along with fractures of neck and back and ribs. I have been dizzy ever since with sometimes experiencing a vasovagil lightheadedness with nausea.
A neurologist recommended an autonomic reflex screen, but a provider here in the Phoenix area refuses to treat people with my Humana Medicare coverage. I would like to get a Mayo apt. Either in AZ or MN where we live six months of the year. How can I go about that? By the way, your post as been the only one in all these months that led to an understanding of what might be going on with me, since nobody else can figure it out after many labs and appointments.
Hello @lakelifelady, If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. Also,you can find out more about billing and insurance at Mayo Clinic here:
Have you been to Mayo Clinic before?
Thank you John Bishop. Yes, I was an Endocrinology patient a while back at Rochester. I will pursue your links.
@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?
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
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.
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
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!