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DiscussionHas anyone experienced internal vibrations?
Brain & Nervous System | Last Active: 5 days ago | Replies (914)Comment receiving replies
Replies to "I have them too get over the last two years I've seen many different specialists and..."
Let me tell you my story which might help you. I was having horrible nerve and muscle pain since I was 13 and not one doctor could find out what was going on. Most doctors told me to go for counseling because they could not find out what was wrong and it was all in my head! And this statement was coming from every doctor I saw even Neurologist and numerous test. I didn't give up because I knew there was something wrong. So in 2000 at the age of 50 I found a Neurologist, who was super smart, did an EMG and realized something was wrong. He said I either have Lupus, MS or HNPP (Hereditary Nerve Pressure Palsy). So he sent me for genetic testing and it came back with HNPP, which is a very rare neurological disease. No treatment for it, only physical therapy and suffer through the pain. But then, in 2011 I had flu like symptoms and I felt like I was paralyzed. The pain was unbearable! Neck, shoulders, upper arms and legs. And again not one doctor could figure out what was wrong. One said Fibromyalgia and then they sent me to UCLA and he said Polymyalgia Rheumatica. Which they were both wrong. Finally, a PA that I went to for my wellness exam said something is not right with my blood work. White count high. She sent me to an Infectious Disease Doctor who was a god send. I have CLL, Latent TB and Epstein Barr Virus had reactivated.
I had Mono when I was 20. But besides all that the pain in muscles and nerves continued and my neurologist said it was not coming from the HNPP. It might be something with the IOS channels. Another autoimmune problem. I get tremors(vibrating feeling throughout my body), and also, they think I have POTS which has to do with the autonomic nerve. Terrible attacks of sweating, frequent urination, heartburn, constant bowel movements and fainting, and it happens even without movement. I could be laying down and all of a sudden it starts.
The neurologist I have now is wonderful and super super smart. He has ordered and MRI of the Bracial Plexis nerves in my neck, he's doing more genetic testing and referring me to a Cardiologist and Rheumatologist (my ANA and RNP are all positive high) He reassured me we will get to the bottom of this. It is very frustrating to have all these symptoms especially when most test come back normal.
But, there is something going on causing all these problems. Never stop looking for answers. We know our bodies best. If I wasn't persistent I would have never found out I had HNPP. Even when I had CLL and I knew something wasn't right, swollen glands, fatigue, high white count, I was told it was a Urinary Tract Infection!!!! Be your own advocate and don't give up. There are answers, you just have to find the right doctor who thinks outside of the box!
But, in the meantime, we have to suffer. I have trouble, sleeping because that's when the symptoms are at their worst. I have trouble walking, doing everyday chores around the house and can only do very little exercise. The best is when I am feeling like this, I take a pain med Tramadol and I rest all day. It does help ease the pain, but does not take it completely away. I hope this helps you cope with what you are going through. Only people who have the same symptoms can understand.