It seems that a comprehensive workup has been performed. It is unlikely that I can offer anything over the internet that 4 neurologists and orthopedic specialists already wouldn't have thought of.
A consideration would be a rheumatology workup - which can cause non-specific symptoms in the absence of obvious disease. An ANA level and rheumatoid factor should be considered as an initial screen.
As for the cervical pain, if the MRIs and orthopedic referrals are non-revealing, a referral to a physiatrist (rehabilitation MD) can be considered to evaluate rehabilitation options and pain management.
Further neurologic opinions can be obtained at a major academic medical center.
These options can be discussed with her personal physician.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
I was actually going to suggst a major center as well. I recently went to the Mayo Clinic for chest related issues after seeing 3 local cardiologists. It was the best experience I have ever had. My testing was thorough and the whole process is amazing. I don't know if they can help, but it wouldn't hurt to try. Especially if you have a PPO and can self-refer there.
By the way, I've heard the Cleveland Clinic is awesome also. I just like in Florida so the Jacksonville Mayo Clinic was the best option for me.
I'm not a doctor, but have had similar symptoms. Does she have an internal medicine Dr. who might help rule out things? If her primary doctor can run some blood tests for CBC, electrolytes, kidney, liver, and endocrine, then you might be able to get a better idea of which direction to go if the cervical problem doesn't explain all of her symptoms. Does she get enough water or too much water in a day? Do any foods or beverages increase or decrease her symptoms? A diary of intake and symptoms jotted here & there may help, too. I'm currently going to an ENT running an MRI with and w/out contrast for a possible acoustic neuroma, but my internal medicine Dr. found my carbon dioxide levels in my blood test to be at the very high end of normal range. Also, my glucose levels were a little high. These point to needing an Endocrinologist. Otherwise the blood tests were normal. I have buzzing, tingling sensations in lower 2/3 face, and hand currently, but sometimes get it other places, too. I'm currently researching metabolic alkalosis or a pituitary or an adrenal gland problem, because I also tend to get really, really cold sensations with cold skin then incredible sleepiness. This happened the same day my lower face really tingled. There are MANY causes of tingling - anxiety is only ruled "in" once ALL other possible causes are ruled out - it is a shame some leap to that diagnosis. Last week I got cold, slept 2 hours, then when I tried to pull my left side equally into a smile I twitched at the corner, and when my ENT had me crinkle up my nose my cheek or brows tended to twitch or spasm. Before my fingers went noticably numb I dropped an object out of the blue from that hand. I had a micronodular BCC near my nose/eye removed 3 yrs. ago, & a BCC up on my arm removed 2 yrs. ago. I had the buzzing, tingly sensation in that hand until the BCC on my upper arm was removed. I also have ear-ringing which adds to the overall buzzing sensation, had some vertigo earlier last month hence the ENT. Does she ear-ringing or vertigo? If the cervical vertebrae pinch any nerves or spinal cord that may well cause her symptoms. In case it is as simple as dehydration a good test might be to see if adequate water each day improves things. If 4 neurologists say cervical, then there might/might not be another source of her symptoms - at least you know one cause and one treatment suggested. They are definitely well-trained. She could also ask her Dr. what she can take to help heal her nervous system. Is it potassium, magnesium?-I'm not sure. Best wishes to her & you!
Thanks so much for your feedback; much more informative, I feel, than the Dr.'s response (I feel). . unfortunately!
I'll pass these suggestions by her and see what she's had done already/if any of it. I think its a DISGRACE that there is EVEN a section for "UNDIAGNOSED" symptoms! With all the MD's in the world, HOW could all of the people that seem to have similar experiences be left in the DARK????
I CAN'T STAND IT FOR HER!!
Much thanks to you both. It seems like the M.D.'s responses are pretty "formulary". . i.e. see your physician or "I haven't seen you so I can't say"! Why have such a forum, then? Obviously, the Doctors here won't actually "see" the patients, but isn't there some DATABASE of symptoms and causes? So sad! So frustrating!
I know how frustrating this is for you all. I went to the Mayo Clinic because of my chest symptoms but while there the cardio decided (based on things I told him in our visit) that I should also see an internal med doc. So, off I went to the 2nd floor. I saw the internal med doc and my visit and exam with him was TWO HOURS LONG!!!! I never felt rushed and we talked about all my frustrating symptoms. He then became my "reference doc". He sent me to the ENT, endocrinologist, gastro doc and the pulmonologist. THEY make these appointments for you and all these wonderful docs are in the same building as well as any testing they individually may request. Sometimes they can get it all done over the course of a few days, mine took a couple weeks because I have kids and wanted to get back with them. My longest stay there was 3 days and I had bam-bam-bam, test after test. They are so efficient and so thorough and so NICE, everyone, it is unbelievable. You do, however, have to pay for your lodging. Luckily, my aunt and uncle live about 30 minutes away so that wasn't a problem but even if they didn't, I would have gladly paid to get the quality of help that I got. I'm telling you, it was awesome. (and NO I don't work for them...lol)
I am still working through some unexplained things but at least I know the MAJOR stuff has been ruled out and I can go on from there.
I wish your family the very, very best.
Good luck to you all.
I have most of what you describe in your sister. And, like her I was happy, energetic, fit etc.... I don't have any children though. I've been like this for almost 2 years now with no answers. Don't waste your time going to the Cleveland Clinic. I saw 4 doctors there. They will pretty much tell you it's all in her head like they did me. Your sister sound almost like a carbon copy of me.
You are very welcome. If I could afford to leave my HMO and go to Mayo, it sure sounds tempting, and I don't even live in a state that has a Mayo clinic. Last week I went to the dentist for sudden teeth sensitivity to cool and hot liquids, even air when I breathed in, and am currently toughing it out to see if I need root canals to my teeth or if it is as he suspects the post-palsy painful effects of the facial nerve being affected possibly by Bells Palsy (except my eye lids and forehead work fine). My acoustic MRI came back normal. More and more it is looking like a virus or something metabolic damaging my nerves causing my problems, but my sister had Bells Palsy crop up from her thyroid in her neck. It developed a cyst, nodules, goiter, and was growing aggressively downward and toward her back. It started pinching off her windpipe and esophagus and nerves in her neck affecting both her left arm and her right face, and all of her thyroid blood tests always came back normal. Her surgeon at Kaisser who does thyroid removals daily and in vast quantities said hers was one of the hardest to remove because of the way it grew downward. At first glance her problems seemed neurological with the tingling, and muscle weakness, but it was due to the nerves being pressed on, and possibly her oxygen intake being affected by the restricted airway issues it caused. Even though my carbon dioxide levels are on the gradual rise, and a new neurologist noticed instantly my swollen lower left leg, ankle, my internal medicine primary Dr. seems a little skeptical that it is anything endocrine or circulatory related. He almost acts like these things are all in my head, too, even though my complaints with past Dr's. have always eventually turned up medically verifiable problems - even my kidney stone blockage one time didn't show on xray until 2-3 weeks of agony later. That wasn't in my head, but my current Dr. might've chalked it up to that. My aunt who had an adrenal tumor above her kidney like me had problems with swollen ankles, and one type of Diabetes, but I don't know if she was Type 1 or Type 2 or if she also had vibrational sensations. My primary Dr. just quips that my Carbon Dioxide levels are normal even though they have been on the rise and were last at the very top of their normal range which is actually 3 or 4 mmol/L higher than other labs normal ranges even on the government's Medline website. But I get to feeling like my teeth are being vibrated against each other, and they get sore, and today it is as if I am sitting on a vibrating chair and floor, like very fine vibrations everywhere. There is Parkinsons on both sides of my family and in both genders, but the carbon dioxide levels and higher glucose levels definitely shout "endocrine" problem, and my history of kidney stones shouts it even louder, and both those levels can affect nerves so it makes sense to me. Unfortunately, my HMO primary Dr. says my endocrine status is normal. I'm not sure what he is focusing on, but it seems like perhaps I may have to strike out on my own to get to an endocrinologist. Even a friend of ours who is an endocrinologist said with my kidney stones I should be seeing an endocrinologist, and my Dr. still seems resistant to sending me to one. I can relate to the frustration. It feels like the search for an answer is going in circles sometimes. I am going to stop trying to get help from Cleveland Clinic Dr. forums, because either they don't answer or the forums are always full. I agree that Mayo may be what I'll have to do if I can't get into an endocrinologist at my clinic.
I JUST RECOVERED FROM A BOUT WITH WITH THOSE SAME TWINGES AND BUZZINGS. IT WAS ABSOLUTELY ANNOYING. I FOUND THAT IF I ADDED A LITTLE MORE WALKING EACH DAY IT HELPED. I ALSO WENT BACK ON BY B-COMPLEX AND CO Q 10. THE BUZZING JUST DISAPPEARED. I ALSO MADE MYSELF IGNORE IT AND FOUND SOMETHING ELSE TO DO BESIDES SIT OR STAND STILL. WALKING PROBABLY WAS THE BEST THING THAT WORKED. PAM
Have her see a RA doctor for Fibromyalgia, Lupus and whatever else the doctor suspects. Could also be restless legs syndrome, periodic limb movements, might want to get a sleep study done too, because they can find all sorts of things that aren't found by other doctors or the patient themselves. Look up symptoms of chushings, thyroid disease, chronic fatigue and the above mentioned illness' on the internet. It is good that she has you that cares enough to do the research. God Bless you both
I am sorry to hear about the undiagnosed symptoms that this individual is having. All to often a Doctor will run tests and if it is negative for whatever they are looking for, then the patient is just dismissed. My husband has been having unusual symptoms also. We went to the Doc yesterday and he had no idea of what was causing the tingling, numbness, prickly feeling all over his body, including extremities, face and head. It is nocturnal in occurrence, except until yesterday when he had an episode later after leaving the Doc's office. At first, I wondered about circulation, he has CAD and four stents, but the symptoms did not fit. I thought about anxiety but that does not fit either. Neurological or hormonal would be my guess but I am not a Doc. I would be much interested in following your case. If you should find out what is causing your symptoms, please post it. I wish you well and if anyone has any idea of what my husband's problem may be, please post that also. Thank you.
HI.....I read your post with interest and it sounds very much like what I had and spent two years and fourteen doctors trying to find the cause. It turned out to be neurological Lyme disease, however, in order to be properly evaluated, tested and diagnosed, you MUST see a Lyme specialist. I know what you're going through with the doctors. One neuro at a university insinuated that perhaps I had been abused by my father as a child and the other said it was because I had a hysterectomy years prior. Also, there is a saying in the Lyme community and that's, "Hold the Mayo" because countless of us have gone there thinking we were going to get answers to our symptoms. Not so. When bacteria enters the pristine environment of the central nervous system, all sorts of bizarre things happen. I say it's like being the unwitting victim of a horrific scientific experiment and then being denied the antidote. Good luck with your sister and I am providing you with a complete symptoms list just in case you want to pursue this.
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Heavy feeling in one or more limbs
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Sudden jerking of fingers or entire limbs
Pain in spinal column
Unexplained weight gain, loss
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well. (If it was mild, you may not even recall this.)
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears
Digestive and Excretory Systems
Diarrhea, irritable bowel
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)
Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Mood swings, irritability, rage
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Forgetting how to perform simple tasks
Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
I have been facing similar sensations without the actual occurence. Eg. The buzzing and the vibrational sensation -- is a sensation. I do not actually vibrate like in a fever.
What I did notice was that it also leaves me wanting to be completely lethargic or go out and do some physical activity. Both help. I would not be able to do any mental activity at all -- like focus on getting my information technology work done.
I thought about it for several days and then started tracking (mentally) when it occured. I noticed that it always occured after I had some sugar or simple-carbohydrate food or drink.
I checked my sugar levels (mother is diabetic) but everything was normal -- including fasting sugar (80-90) and non-fasting sugar (110-125).
So the question that I am left with is -- why is sugar causing that feeling without changing the sugar level.