Monthly shaking episodes that continue to progress

It might help to look through the neurosymptoms.org website at http://www.neurosymptoms.org/#. You'll see many, if not all, of your symptoms there and good information to explain why this is real and not all in your head, even though the tests show you are the picture of health. I am kind of where you are, maybe just a little bit further along in finding my treatment. I was diagnosed with dystonia 10 years ago, then re-evaluated last month by a movement disorders specialist after additional types of symptoms began to develop (jerking, twitching, etc.). This time around I had more extensive testing including a brain MRI and was diagnosed with "functional movement disorder". On the one hand I was delighted to learn I did not have a brain tumor or any other organic problems of the brain, but it also meant I still do have problems with my nervous system. As my neurologists explained, the brain has hardware and software, and in my case I have a software problem. The good news is there is treatment for functional nervous disorders and prognosis for getting better is encouraging with the right treatment. It has been challenging to wrap my mind around this new diagnosis, but reading the information at the neurosymptoms.org website more than once has greatly helped me understand and accept all of this.

Another good website that has helped me understand and accept my functional nervous disorder is FNDHope, https://fndhope.org/fnd-guide/

Sure I would to talk to him or anyone who can help, I am so defeated it seems no dr understands and maybe He can help me, I want my life back so badly

Thank you and everyone, the kindness of this group is amazing, me pcp I have had for 16 years doesn't understand and keeps thinking its anxiety due to the fall and injuries
it's not anxiety it's internal vibrations? tinnitus insomnia cognitive problems , dry eyes back hip knee and neck pain and left arm goes numb pinched nerve at c 5 6 7 and L5 but still shakes while numb, i pray and cry a lot , I just want to be me again

Cathy, Dr. Arce's number is 904-383-1022. He's with Shands, Univerity of Florida, in Jacksonville. Talk to his receptionist/office manager who is nice and she can guide you for help. Yes, I've had the internal shakiness all my life. I've also had dizziness to the point of having a hard time driving. I didn't want to graduate from high school because that meant that I would have to work. My father even called me a misfit. This came from my mother's side of the family. I got Dystonia from my Mom's side and Type 1 diabetes and Microscopic Colitis from my Dad's side. I got bad genes from both sides of my family and they were poor parents. They didn't know how to parent. My life has been HELL!

As I have stated before, Dystonia is only diagnosed by your movements and neuro checks. MRIs, Cat Scans, X-rays, and nothing in radiology will diagnose Dystonia. Only how you act. Please don't waste your money on this. If they think it's something else, go for the Cat Scans, MRIs, and X-rays, but your brain will show nothing, zilch, nada pertaining to Dystonia.

My internal vibrating or shakiness started spring of last year and has only gotten worse since. I finally went to the doctor who sent me to a neurologist. I have undergone several tests per the neurologist. I have been diagnosed with POTS and Vitamin B deficiency so far as a result of the tests. I am awaiting results of blood tests to rule out thyroid issues, Rocky Mountain Spotted fever and Lymes Disease. I am having a nerve conduction test and possibly an EMG next week. The neurologist has already decided that I don't have Parkinson's, MS or anxiety disorder, although the internal tremors do cause me some anxiety. I'm an otherwise healthy 66 year old retired nurse with no medical history except for a stent of PVCs which lasted 18 months which stopped a few years ago. The Dr. has started me on Neurontin and Vitamin B therapy. I am having no pain but this condition is clearly NOT normal. I will check this board from time to time and will keep it updated as to my situation.

To Calical... Look up Transverse Myelitis. Mayne similar symptoms to what you are experiencing...?

Hi, @tigertoo, and welcome to Mayo Clinic Connect. Thanks for sharing some of your situation. It sounds as though you are starting to get some answers with the POTS and Vitamin B deficiency diagnoses, but are still hoping to get more information on the internal vibrating or shakiness you've experienced.

I'd like you to meet some of the others in this discussion, such as @oakbourne @cathy514 @jubilee @hopeful33250 @1000016352 and others, who may have some thoughts for you as you wait for test results.

How are these vibrations and shakiness affecting your day-to-day life, @tigertoo?

Hello @tigertoo

I would like to join Lisa (@lisalucier) in welcoming you to Mayo Connect. The internal shakiness/tremors is often related to Parkinson's (PD). I do understand that your neurologist has ruled PD out but you might keep this diagnosis in the back of your mind if no other diagnosis materializes. I had symptoms of PD for almost 20 years and saw a number of doctors before a definitive diagnosis was made. PD is diagnosed in a rather peculiar way in that if nothing else is the obvious diagnosis the doctor will often give you some carbidopa/levodopa and see if that helps the symptoms. If it does help, then they decide you have PD. However, I'm not a medical professional and I can only share my own experiences.

Are you feeling any better with the neurontin and the Vitamin B therapy? Do you have any other symptoms that relate to balance, unsteady gait, low volume voice, constipation, etc.?