Have they ruled out Chiari Malformation? I have many of the same symptoms that you have described, and I was just diagnosed with Chiari. I think my neurologist found it on the MRI scans. I also have bulging discs C5-6 and bone spurs. Next week I go for an EMG, which has me a little unnerved.
Anyway, I pasted some of the symptoms of Chiari - hope this helps and good luck!!
Chiari malformation type I
Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I can also experience:
Neck pain (running down the shoulders at times)
Unsteady gait (problems with balance)
Poor hand coordination (fine motor skills)
Numbness and tingling of the hands and feet
Dizziness
Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
Vision problems (blurred or double vision)
Slurred speech
Less often, people with Chiari malformation may experience:
Ringing or buzzing in the ears (tinnitus)
Poor bladder control
Chest pain, in a band-like pattern around the chest
Curvature of the spine (scoliosis) related to spinal cord impairment
Abnormal breathing — specifically, sleep apnea, characterized by periods of breathing cessation during sleep
Ask for an Epstein Barr test. That's the virus that, among other things, causes mono. If you had a severe case of the flu before all this started it could have been initial exposure to Epstein Barr. A blood test will confirm previous or current active disease. Epstein Barr can cause many of the problems you are experiencing or complicate existing disc problems with inflammation.
Hello, I too am absolutely amazed that there are so many people out there with exactly the same symptoms, yet there doesn't seem to be a single MD that would be able to diagnose the cause! Are we still in a Victorian era? This is possibly the most neglected syndrome out there. The best the medical community can do is tell us that this is "fibromyalgia" or similar "non-diagnosis", i.e. we have no clue what is wrong with you, so we will name your symptoms and you better be happy with that. Fibromyalgia should be named "NCWTHTI", for "no clue what the heck this is". I have been to at least half a dozen doctors now, with varying specialties, and I get a different diagnosis nearly every time.
I have the same symptoms. Actually, I don't even have to describe them, because they are exactly as everyone has listed them here, although I am still waiting for my MRI. I used to be such a driven, active person, now I have to push myself hard just to get through the day. It makes me mad and frustrated to be robbed of my previous life, I just want my life back. I am not depressed and I don't think neither of you have a mental issue either, I just get miserable because I can't do the things I love to do. Is that so hard to understand?
One of us should find an MD that is willing to dedicate time to defining this, describing the symptoms and investigating whether it has ever been successfully treated. If Mayo clinic has such a line-up of these cases, don't they have a designated specialist? I would be there tomorrow! This doesn't boast too well for Mayo clinic.
Hi Yogamommy,
Your story sounds very similar. I hope you're still contributing to this forum because I was really glad to stumble across your post. I was diagnosed with bulging disks c5- c7 in March and have been (internal) vibrating, head to toe muscle twitching(mainly waist down), tinnitus, dizziness since then. Prior to the bulging disks, my head began buzzing shortly after a bad flu/pneumonia which was treated with a 5 day Z pak in late Feb. I've never been able to find out if this might be related since it's been a whirlwind of doctors with no answers.I've had a brain MRI-normal, nerve test-normal and next the EEG since my head's been buzzing/plus dizziness, intensely for weeks now. My GP tested for thyroid, B12, Lyme and MS--nada. Routine blood test in February also came back normal. I'm on Klonopin 0.5 mg once at night-little over a month, but the only thing it helps with is sleep. My internal vibrations/muscle twitching is 24/7 and vary with intesity-unpredictable, usually worse in afternoon to nighttime...much worse. I've been trying to keep physically active but I sometimes I feel mentally/physically exhausted. I'm scheduled to see a GP for more tests and was hoping that you might have some suggestions. It's a comfort that we're not alone here. After reading a few posts, I wonder if it could be perimenopause, I'm 38?
I have been experiencing similar symptoms since at least 2004, off and on, with the symptoms getting much worse since 2007. At one point i could hardly get out of bed, actually crawling to the bathroom. Been to many specialists over time including rheumatoligist at cleveland university, neuroligists at cleveland clinic and upmc etc etc. I also ended up changing my PCP fairly early on in my "process" as he did not believe me. I actually took my husband with me to one visit just to verify what was going on because EVERYONE had me believing this was all in my head. On the drive home my husband asked me what I was going to do because this doctor did not believe me....even after he pleaded my case also telling the dr that the person sitting there was not his wife. Unfortunately, it has become his wife as no one has given me anything that helps. I have been told of SO many things that i DONT have and only a few things that I do have. I do have the diagnoses of chronic fatigue and fibromyalgia, also have bulging discs at c4-c5, c5-c6, c6-c7, L4-L5, and L5-s1. Have had physical therapy with minimal relief. chiropractic therapies seem to have minimal relief also, but does help when the pain and symptoms are unbearable. i am told that after my PT i would have to try some nerve blocks before being referred for any kind of surgery and even then i am not a very good surgical canidate as the bulges "are not bad" and i am too young (43). I have tried alternative/natruopaths/accupuncture along with traditional medicine with only minimal relief of sypmtoms and becoming med dependent to get through the days. While it works, it sure doesnt feel like living. i guess that i should state my symptoms---severe fatigue, severe muscle aches and pains mainly on my left side (with all bulging discs on the right side which has all of the doctors and therapists mystified), headaches, vertigo, left side of my face twitches is swollen numb and will progress to my eye when i am stressed or tired (all symptoms are worse when i am stressed or tired). I also have severe GI problems which have been ruled out as anything major several times but sometimes the worst of all is the depression and anxiety that go along with all of this. I was always a very active person, working and enjoying my hobbies which almost all were physical (running, biking, equestrian sports). now, even though we have our own horse farm, i do very little if anything physical except going to work (which now is part time) and trying to get some house and barn work done, NOTHING like what i used to be able to do. I feel very let down by the medical community which is hard also because I am an RN. i was referred to the mayo clinic, but after completing a very long and in depth phone call interview, i was told that they would not see me because there were too many other people waiting to be seen with the same symptoms. that is depressing on sooooo many levels....so many people out there suffering from the same things and begging for relief. i have been tempted to try one of the fibromyalgia clinics that are out there, but, of course, they do not accept insurance and they are very expensive and want you to join a "membership club" where you pay up front for treatments and get a "discount". most of those treatments are based on mineral and vitamin deficiencies but all of my tests show OK levels except for thyroid and vitamin d which are both now in "normal" ranges following treatment. I wish that I had better news for everyone, but it does make me feel better knowing that there are people who KNOW what I am feeling. my friends try (the ones that have bothered to stay around as i am not as much fun as i used to be) and my husband tries very very hard, but still, no one knows unless you are feeling it. I have so many people tell me you just need to go do more, or not think about it as much, or you have so much to be grateful for---the last one is absolutely true, but it still does not help.
would love to read about anything that does help people feel better.
Vitamin D was 24. Cortisol was slightly high. Not disease level high, but high end of normal. She recommended a vitamin regimen. I go back in 2 months. I guess time will tell.