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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jenatsky | @jenatsky | May 19, 2023

In reply to @khali "Same here the Neurologist don't know what is and they only want to prescribe drugs and..." + (show)

Neurologist typically prescribe drugs for patients they treat since they don’t perform surgery. You did go to the doctor to seek relief and the doctor did their part hopefully. As a retired nurse I find as I age medical treatments I receive I only to help me sustain my current level of health, not correct the ailment. At 71 the things that have gone wrong with my body can’t be completely corrected but hopefully treated. If my symptoms from neuropathy can be lessened with drugs I’m all for it vs. more back surgery and pain I don’t want or need. I have no illusions that medicine can fix everything, don’t always know the answer and the general public should keep this in mind.

triciab | @triciab | May 19, 2023

In reply to @purpleturtle "I see a motion specialist for my tremors. He sent me for a DaTscan to rule..." + (show)

After having my DaTscan 8 years ago, I was diagnosed with Orthostatic Tremor. I have been on a walker for 6 years. But my symptoms began over 22 years ago when I realized that I couldn’t stand still for more than a few moments and then my tremor would begin. I needed to walk quickly, avoid crowds or just sit down. Having had back surgery in ‘91, I always thought my problems were due to my back pain. There is a support group for Primary Orthostatic Tremor on Facebook which is very helpful!

katcollins | @katcollins | May 19, 2023

In reply to @rgriffinks "I'm sorry to hear what you're going through. I went through a 5 year journey trying..." + (show)

I also was diagnosed with FMD. I’ve had tremors, vibrations, itching, burning, pain, involuntary movements, non epileptic seizures. I would agree that change of lifestyle can help improve your symptoms. Also, my FMD is migraine and pain triggered so I am on migraine medication now.
Best of luck to you all,
Kat

jenatsky | @jenatsky | May 22, 2023

Have you cut out caffeine before bedtime? Have you developed anxiety due to the vibrations therefore possibly adding to it? Look into your diet first for foods that might be aggravating your symptoms too.

amimiof4 | @amimiof4 | May 24, 2023

In reply to @jenatsky "Have you cut out caffeine before bedtime? Have you developed anxiety due to the vibrations therefore..." + (show)

I’m sorry but I disagree with your response. I’ve had physical and mental illness for years. I know my internal vibrations and my brain not communicating with my left side of my body had nothing to do with drinking to much coffee. Prayers to everyone suffering with illness which a doctor can’t diagnose.

suesea | @suesea | Nov 10 5:19pm

In reply to @purpleturtle "I see a motion specialist for my tremors. He sent me for a DaTscan to rule..." + (show)

@purpleturtle
Hello. Did anything help stop the internal tremors? I can't stand it. It's like a 1000 bees in my chest, abdomen, and I feel it in my face, arms - everywhere. It's driving me up the wall. I'm on Clonazepam. You'd think that would calm me down, but it doesn't. I'm also on 30 mg of oxycodone for my spine issues. I take a Clonazepam and a pain pill, and I often feel worse. It wakes me up. It makes me a nervous wreck, so I can't enjoy living even when good things are happening. Thank you for your time. I sure hope you received help. This has been the hardest thing to investigate. It's like no doctor knows what it is and there's no available, useful, research.

God bless,
Susan