What type of neurologist should I see for internal tremors?

Posted by trishamac @trishamac, May 16, 2023

Have had intense 'vibrations' which primarily come from my pelvic area down to my feet. Was diagnosed at the ER with delusional behavior, which is not true. I do have pelvic floor dysfunction, have had a severe stroke caused by a brain bleed, had two brain surgeries as well. I saw a NP connected with the neurologist I see for seizure medication monitoring who didn't know what I was talking about. I keep getting referred to the same type of neurologist even though I know that it's the wrong one. I finally sought out the help from a doctor who prescribed low dose Naltrexone for the pain. It seems to be working but I am still getting to the 4.5 mg goal. I am desperate to get help in understanding what is happening to me and how I can get some relief. I know it's a nerve issue and physical therapy has not helped. I would appreciate if someone could put me on the path to finding a neurologist who doesn't just dismiss me. Thank you for any help you can give me.

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Same here the Neurologist don't know what is and they only want to prescribe drugs and not get to the root cause

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Could it be related to anxiety?

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I would check out Lyme and coinfections, maybe mold.

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Twenty years ago I had what I called episodes. I had pain and weakness just on the left side of my body. It was like my brain wasn’t communicating with my left side. I did have severe vibrations in my left arm. Tremors as well. I was told possible ms or Parkinson’s and then fibromyalgia. Suddenly my episodes did stop. My neurologist said it may never come back or come back with a vengeance. They never completely stopped, just wasn’t as intense. I was told my symptoms were in my head. Recently my symptoms are getting worse again and I’m no longer able to work. I’m unable to help you with types of neurologist but if you have good insurance, research doctors in your area. I wish you the best.

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First off you are not delusional! I too have felt the tremors. Thought it was a train in the neighborhood shaking the bed as that is the only time I felt it. My SO did not feel the shaking. They have since disappeared and other things came along. Tinnitus, weird itching on my legs, arms, and hips. I have no advice to offer except to get healthy. Cut out sugar, have your vitamin levels checked, drink lots of water, exercise as much as much as you can. I am taking a handful of supplements now and recently found out that I have a calcified stylohoid ligament in my throat which causes neuropathy. This was found by my dentist of all things! I wish you the best in all your endeavors.

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@rezell

First off you are not delusional! I too have felt the tremors. Thought it was a train in the neighborhood shaking the bed as that is the only time I felt it. My SO did not feel the shaking. They have since disappeared and other things came along. Tinnitus, weird itching on my legs, arms, and hips. I have no advice to offer except to get healthy. Cut out sugar, have your vitamin levels checked, drink lots of water, exercise as much as much as you can. I am taking a handful of supplements now and recently found out that I have a calcified stylohoid ligament in my throat which causes neuropathy. This was found by my dentist of all things! I wish you the best in all your endeavors.

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I am now seeing a physician who is part of the Health and Healing Dept. of the Neurology Dept. I have been placed low dose Naltrexone (a drug originally used for opioid addicts to wean them off of the drugs) which starts out at .25 mg and increasing to 4.5 mg. as they discovered that addicts with severe pain ended up with improvement when they got to the 4.5 mg. level of weaning off the Naltrexone. The theory is that Naltrexone increases the natural opioids in the body which will eventually kick in. I am already experiencing an improvement with the pain but the tremors have increased. I am hoping it works for me. The doctor has also conducted testing of a number of things that I didn't even know existed, to find out what supplements might be helpful, as well as discovering what other medical conditions that might be the culprit for the pain. It is quite interesting.

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I'm sorry to hear what you're going through. I went through a 5 year journey trying to get help with tremors and excruciating nerve pain. I saw several Neurologists at Mayo as well as all over my home state. Was misdiagnosed several times. However, somehow I got lucky and was seen by Dr. Pittock in Rochester. He writes the textbooks for med students. I was finally diagnosed with FND (Functional Neurological Disorder); FMD ((Functional Movement Disorder); and another one in my brain I can't remember right now. Anyway, I started studying all the recent breakthroughs in this. Opioids do nothing for nerve pain and only cause more problems. Exercise, food as medicine, yoga (which I hate lol), diaphragmatic breathing. Those have been huge for me. I still have flares, I still have pain daily, but I'm no longer laying on the floor screaming. You might look into FND.

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@rgriffinks

I'm sorry to hear what you're going through. I went through a 5 year journey trying to get help with tremors and excruciating nerve pain. I saw several Neurologists at Mayo as well as all over my home state. Was misdiagnosed several times. However, somehow I got lucky and was seen by Dr. Pittock in Rochester. He writes the textbooks for med students. I was finally diagnosed with FND (Functional Neurological Disorder); FMD ((Functional Movement Disorder); and another one in my brain I can't remember right now. Anyway, I started studying all the recent breakthroughs in this. Opioids do nothing for nerve pain and only cause more problems. Exercise, food as medicine, yoga (which I hate lol), diaphragmatic breathing. Those have been huge for me. I still have flares, I still have pain daily, but I'm no longer laying on the floor screaming. You might look into FND.

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I have many dysfunctions in my body that I have been diagnosed with and most are the result of all the surgeries I have undergone. The two that cause the most pain comes from a 2-level cervical fusion in 2002 and pelvic floor dysfunction which started when my youngest child was born in 1980. So I have been dealing with many modalities to try and help the pain. I slather myself with just about any cream that helps with pain, using one on my pelvic area and another on my neck. I have had nerve blocks but have experienced inflammatory responses to anti-inflammatories like steroids and others. My body challenges me every time I try a new modality. I can no longer exercise like I used to as I have severe balance and visual disabilities and have to use a walker to go everywhere. I do chair exercises and have used meditation (which works a lot of the time) since 1990. I will just keep trucking on, doing the best I can. I have hopes that, with all the work that is being done on alternatives to pain medications, more relief can be found for the future. It really helps to know that we are not alone on this journey and suggestions from everyone are paramount and wellcomed.

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I see a motion specialist for my tremors. He sent me for a DaTscan to rule out Parkinson. Very pleased with him. I have had medication, therapy and botox for my tremors .

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I went through all that as well. From what I understand, FND gets misdiagnosed as Parkinson's, MS, and several others, which I went through them all. In addition, they labeled several autoimmune disorders that ended up not being accurate. I think it takes a Neurologist who will take the time to listen to you and everything you've gone through. Someone who will step back and look at the big picture. I'm going to Mayo's BeST program in July. I went in for an evaluation to see if I was a good candidate, and they taught me some things while there. I'll be honest, I was very skeptical. But I've learned to stop my tremors and spastic jerking. So I'm very hopeful.

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