I've waited so long to post a question and now I don't even know where to begin. I have SO MANY weird symptoms. I will try to remember them all. Sometimes I have them at the same time and sometimes not. I will go weeks with the symptoms and then weeks without them, but they ALWAYS return. I don't know if they are related; hopefully, you can help me with that. I think it's best for me to just list them. Here goes: Sharp pains in my head, burning and tingling in my head, pain in the upper neck/bottom of head, constant dizziness even when sitting or lying down, sometimes my lips feel as though they are drawing up, my hands are numb EVERY MORNING when I wake up and seem to feel 3 times their size(goes away after a few minutes), have had numbing/tingling in all parts of my body at one time or another (including my tongue), I have a head tremor, sometimes my legs feel very heavy as if they were filled up with cement. I'm sure there's more I'm forgetting and I'll be mad when I remember. I HAVE been to Neurologists and I can't seem to get ANY of them to do ANY test on me. They ALL say it's just anxiety. I have a cousin with MS. Could these be MS symptoms. I also have a great grandmother with Parkinsons Disease, although, I don't think I have any of those symptoms other than the head tremor which I'm told is usually the last symptom to appear. I realize you can't diagnose without examining me and I realize I have many crazy things going on, but I would love to get your opinion on what this could be. Sorry this is so long. Thank you in advance.
Dear abcsoup: I'm sorry you have the same symptoms I do, but I'm glad I'm not alone. I was beginning to thing I was nuts! I don't understand why the doctor's wont do any test on me. Maybe, it's because they are military doctors. My husband is in the Navy. I just don't know what to do anymore. I'm 29 and feel 80, as you do. I do seem to feel better when I exercise on a regular basis, but with two children that's hard to do. I try to make time for it though. Please, let me know what you find out at your next appointment and I'll let you know if I find out anything. You can e-mail me at ***@****, if you'd like. Thanks for your reply. It really helps :o)
About anxiety...I think alot of MDs will tell you that your going through anxiety...I have had a few MDs tell me my problems were only anxiety. It wasn't until my back went out a few years ago (I could NOT walk) and I had a MRI done and just recently, after being rear ended and had another MRI....both showed bugling disk in different places...that my MDs can NO longer say "anxiety". But before tge more serious symptoms showed up...all I heard was anxiety...anxiety...anxiety. I had to set this very straigth with my neuro and TOLD him MY SYMPTOMS were causing the anxiety.
Many people do suffer from anxiety, but MDs shouldn't shurg off symptom without testing. I suggest to all three of you to insist that test be done. I went for years with symptoms that could of been treated sooner before my disks became a major problem. If disks are bugling and they aren't treated, they can herniate and all hell can happen. If you have neuro symptoms that are not getting better in a few eeks, INSIST on tests. Keep a log of everything you experience and when and were you experience them and share this with your MDs.
Thanks for your advice Nick. Yes, the symptoms have gone on way longer than a few weeks. It's more like YEARS!!!!! I'm in England right now and will be relocating back to the States this summer. Maybe, I will have better luck with the docs over there. Thanks again!
If there are truly "crazy things going on"........that's what the doctor wrote back to me.....I can't believe it. He is doubting I have these symptoms too. Stress...did I say ANYTHING about having stress? I don't live in stress. Did I say I was on any medication? Well, I'm not! If I DO have anxiety, it's because none of these doctor's believe I have these things going on. They all think it's in my head. Am I EVER going to find a doctor that doesn't think I'm wacko?!
I am also in England but from the states. I was diagnosed with MS and was put on Avonex injections in the states. I was also having a lot of the same symptoms and luckily I was in the states at the time. I have been waiting for a Neuro appointment here and finally will be going in a couple of weeks. I sympathize with you and if you would like an American friend here in England just let me know. I am a 33 year old female.
I am in Weymouth which is in the Southwest. I am not sure about your location. Are you from Virginia? Just because of your nickname. I am from Roanoke, Virginia. Hopefully I will be staying here but I have to convince immigration first.
Hi again.....first, I don't think the MD on this board is saying that there is nothing wrong...your first post to him didn't truely discribe how severe your symptom were. He can only respond to what you wrote.
Let me ask you a question, all the MDs you saw who said you are suffering from stress or anxiety, has any of them attemped to give you a treatment for anxiety? Because if they did, and you still were feeling what you discribed, then you can go back to them and tell them something else is wrong...(and prove them wrong). Or if treatment for anxiety actually helped you, then you would be all the better.
Yes, I've been given medication for anxiety and it didn't help. All they do when I go back and tell them is suggest they try a different type of medication for anxiety. I don't understand why they wont do any test on me. It's probably because they are military doctors. I've heard horror stories about military doctors. I'm starting to believe them myself. Once we get back to the States, they will send me out to a specialist. Hopefully, I can get the ball rolling then. We are going back in May. Thanks for your comment.
Dear vagirrl...I have just started experiencing symptoms that you metnioned except they are not that bad. i have floaters and my vision is blurry . I have an appointment with a neuro doc in two weeks. i feel as if i have some autoimmune disease, (MS). I feel relieved that there are strong people like you out there. please keep me up to date.
I too have been having a lot of your symptoms and am having no luck finding out what is wrong. I live in the US and am also told it is anxiety. I have found out recently that I have asthma which can cause headaches. Sometimes though I wonder if something else is wrong since the headaches are so severe. Please let me know if you have had any new hope.
I just found this on another site and thought I would copy/paste it here for you.....only because you mentioned the heavy arms/legs in the morning.....
Fibromyalgia (FM), formerly known as fibrositis, is a common musculoskeletal syndrome that causes pain in the connective tissues, muscles, joints, and ligaments, as well as an assortment of other symptoms such as sleep disorders, fatigue, and depression. It
I just found this on another site and thought I would copy/paste it here for you.....only because you mentioned the heavy arms/legs in the morning.....
Fibromyalgia (FM), formerly known as fibrositis, is a common musculoskeletal syndrome that causes pain in the connective tissues, muscles, joints, and ligaments, as well as an assortment of other symptoms such as sleep disorders, fatigue, and depression. It
vagirrll...well my doc is gonna run some test and then he's going to send me to a neuro. Im scared because I've been having a lot of double vision/blurry vision and muscle spasms. It also feels as if i have a sinus infection and when i wake up in the morning i have lower back ache. I had night sweats last nite and it freaked me out. i hope they dont find anything serious. the only thing that worries me is the blurry vision b/c that is how MS usually manifests itself.
WOW!! So many responses. Thank you all so much. Thanks for your comments and for pasting that article and everything. It looks like we're not in this alone. We can all be here for eachother. I have heard of Fibromyalgia and thought I had a lot of the symptoms. Then, I spoke to my friend who is an RN. She works in the Emergency Room right now. She said that Fibromyalgia is what the doctors tell people when they don't know what's wrong with them. She said it's just something to make them shut up. She told me not to settle for a Fibromyalgia diagnosis. So.......now I'm confused. Where do I go from here? I hope you will all keep in touch with me and let me know what happens with your doctor's appointments and all that! Thanks again!!!
I have just read all your comments, and like you all i have been around the world on the internet trying to find out what is wrond with my mother... She has just been told she has SMALL FIBER NEUROPATHY...She to was treated for all the thind you all said but came to nothing...I just want to try and help cause when i was looking for answers in other message borads no one answered me or even gave me any ideas... I have never heard of this small fiber neuropathy so i am looking around the internet now to find out what it is and how its treated.... My mother was only told yesterday what she had... She is 56 and has been feeling like this for the past 6 months.. We live in Ireland...
Take care all of you
Hi. I have never heard of Small Fiber Neuropathy either. I'm going to research it and see if I find anything. I'll let you know if I do. I hope your mom is ok. I'm glad she has someone like you to care about her. Take care and good luck.
Have your neurologists look on your MRI to determine if you have a ARNOLD CHIARI MALFORMATION. I have had a lifetime of headaches, then in the last 11 years weird neuro attacks which consisted of numbness, aphagia, visual stuff, extremity odd feelings etc. I was just diagnosed on Friday with a 7mm Arnold Chiari 1 malformation. This is a congenital malformation of the brain that causes neuro symptoms in late adolscense or adulthood. Good news is that it is curable, bad news is that it involves brain surgery. By the way, I had had 3 MRIs where they didn't look for Chiari, so it was missed. It is a rare disorder so often gets overlooked. Good luck!
My wife had many of the same symptoms you have mentioned. numbness, tingling, arms sore when touched, achyness, and it seemed to intensify when her period started. She went to gyn, and he diagnosed her with "perimenopause. she began hormone treatment and has lost almost all trace of the symptoms that 2 nerologists, 2 back specialists, a gen. pract., a bone scan, a mri of the brain and back, and also a bone density scan. All had failed to produce anything other than bills to our med. insurer. I can't tell you the number of blood tests. But, She is getting better all the time and every day she is now watching her diet that the book "Kathy Smith" has published about menopause. My wife is 41. I wonder how few of the doctors really believe there is such a phrase as "I don't know". Peri menopause is real and My wife and I believe it is Wholly overlooked as something that can cause a whole lot of these symptoms and more. If you haven't had a gyn check for a difference in hormone levels you probably should. It couldn't hurt. good luck.
Hi hope you are feeling good today... Do you ever experience the feeling like your hands aren't doing what you want them to do, or like your jaw is locking up. Have you in the past 2 years had any kind of neck injuried or herniated disk? Or past head injuries? The only reason I ask this is about two years ago I hurt my neck trying to sit up in bed, I heard a huge pop and couldn't move. My neck was out of line for about a week. I never went to have it checked which I regret. But it eventully went back into place and the swelling went down.
Most of the women in my family have gone threw menopause in their early to late 30''s. I am 28. Do you experience frequent facial breakouts, a good indicator of hormonal imbalance? My mom was 32 when she went threw menopause and only experienced mood swings and hot flashes. This is the second time I have experienced the headaches this severe with all of the above plus your previous mentioned symptoms. The last episode was back in august/september. Also do you ever experiance severe pain in one of your arms in the upper forearm part? For me when all this happens that is the first symptom I have, which the doctors say is because I carry my son around who is 2. Which I disagree with because I don't lug him around that often. Maybe between all of us we can figure something out to take to the doctors with out them having us think we are crazy or hypocondriacts....
I hope you found some thing that helps you... I have found a few sites that are easy to understand, some of them are only for Doctors or people that understand the words they use..If it is any help to you try www.shingles.mgh.harvard.edu/biopsy/smallfiber.htm
Maybe you can look there and take it from there, like i say it seems easy to understand... The Doctors have started to treat mt Mam and so far so good she feels a bit better, they said it will take 3 week for the drugs to really kick in... So i am praying hard...
Take care and i hope you find what you are looking for..
You know what? I haven't ever injured my neck BUT it pops all the time. Anytime I roll my head around, it pops loud enough for everyone to hear. It's not a CRACK like when people purposely crack their necks, it's a POP! Also, I have back pain all the time. I never know which symptom to tell the doctor about when I go in because I have so many. I usually pick the one that bothers me the most, which is my face going numb. It's only ONE side, when it happens. It started again yesterday and when I woke up this morning, it's still there! Oh...yes, I do have pain in the upper arm. It used to really scare me b/c my father died from heart disease and his arm always hurt during a heart attack. So far, my sister and I have checked out fine with the heart. My Dad was born with a rare, hereditary, heart disease so we get checked every few years or so per my Dad's Cardiologist. Also, I think I might have some TMJ going on. I don't know if that can cause facial numbness or not. I haven't really looked into it. I'm glad I have you guys to talk to or I'd truly be going insane. It helps to know you're not the only one feeling this way! Please, e-mail me...if you want....just put something in the subject that lets me know who you are or I'll delete it, thinking I don't know who it is: ***@**** (That's 5 r's) Take Care!
I share your frustration!
I DO have a very very stressful job - project manager in the IT business at a Fortune 500 company and I also tend to wait and go to a doctor when things are broken. But I tell you I don't appreciate the way my doc brushed me aside with my symptoms. It took me a year to go in for my tendinitis in my hip- I walked around w/ a limp for months. So I am definately no hypochondriac! In fact quite the opposite, I haven't even been in for my "annual" in over 3 years which I know is bad bad. But medicine seems more like "witch doctory" to me these days.
Anyway here are my symptoms:
pins/needles in arms & fingers
slight hand tremors
pins/needles on bottom of feet
Now pins/needles feel stronger on just the left side of body
with numb toe
Muscle twitches upper/lower limbs
Hyperreflexia including Clonus
My PCP just told me it was probably all psychological and due to stress. Said not to worry unless something goes completely numb with no feeling or I became paralyzed. How refreshing! :>
He did refer me to a Neurologist - appt. in 6 weeks. If it is just "stress" and "anxiety" then the medical community better come up with a better and more PROFESSIONAL way of helping their patients manage these distressing symptoms!
Hi everyone, I know that none of you know me yet cause I am new to the site but I wa reviewing your comments reguarding this particular subject and I do have Fibromialgia and it is not a hoax diagnosis and it does have alot of the symptoms of what you guys are describing. My neurologist prescribed me a medication called BACLOFEN anf it has worked wonders. I still have problems but thats only because I have other medical issues. You guys might try that medication. It really works and it does not make you feel drugged like most other meds. If that is what you have it will work.
There is also another condition out there known as LUMBAR SPINAL STENOSIS and it also has simialr symptoms. You might check into that but usually that only affects middle age to older people but can affect younger people as well. I am no0t a medical proffessional I have just done alot of research because I have alot of health problems. There is another sight called www.mic.ki.se/Diseases/askdoc.html#askneuro which allows you to ask a proffessor from harvard medical school neurology department any medical question you want and they will email you back at your personal email address the anwser in detail. Hope that helps you some. Good Luck.
your welcome. Anytime. I have been trying to find anwsers to some of my own medical problems and too know how frustrating it can be to keep running into dead ends every which way you turn. I would be interested in knowing what they say if you dont mind sharing. If it's not too much to ask for you to post what their reply is or you can email me at ***@**** I would like to know what their input was on your symptoms. only becuase I have some of them as well but I am pretty sure I already know what the cause of mine are but just for the sake of argument. Thanks again and Good Luck . You know when they emailed me back they were even able to refer me to several doctors in my spoecific area and everything for second opinions. I thought that was great. Plus Hardvard Medical School is a Grade A school so You know they know what they are talking about. I would trust what they say more than others I think, don't you?
It sounds to me like Fibromyalgia may be a real disorder that matches your symptoms, but is also abused by doctors who lump in folks who don't really have it. In other words, your friend who said Fibro was just a doctor's excuse may have been right in many cases, but not in yours; you may really have it. This thing about hands feeling like lead weights sounds like a pretty distinctive symptom to me.
The real problem then is, they don't know how to treat it, or what causes it, or anything. I know they haven't given up on it, and various research is being done, but so far no solutions.
Stress is definitely used as an excuse for doctor's not knowing, in the same sense that a diagnosis of Irritable Bowel Syndrome often really means Irritable Doctor Syndrome.
Stress, after all, was the known cause of peptic ulcers for decades. Everyone knew that ulcers meant that the patient was to blame for an excessivly stressful lifestyle and it was the patient's fault for being a "type A personality". Then a rogue researcher discovered that Helicobacter Pylori, a well-known and harmless bacteria, was causing the ulcers. They knew the bacteria was there all the time, they even knew about the hypothesis that it caused ulcers. But for decades they told patient after patient that it was a harmless bacteria and the ulcers were their own damn fault (not in so many words, but I'm sure you know what I mean).
Now I understand a short course of specific antibiotics permanently cures an overwhelming majority of ulcers. And so far I haven't heard the medical community say "Oops," Have you?
The truth is, there are bzillions of types of bacteria, virii, and other potential causes, and lots of unexplained disorders that may be caused by them, singly or in some combination. Individual docs have no way of indentifying an agent as a cause even if they see it right there in front of them, because there are just so many of them. If H. Pylori was overlooked, you can bet lots of other agents can be.
So, the medical community needs data mining badly. Data mining uses software to look for any correlations between factors, not just correlations predicted by researches. Then, once they are found, they must be verified using traditional research methods, to be sure they are not the result of chance given the large numbers of relationships being examined.
Btw, in defense of the doc above, you (vagirrrrrl) used the phrase "crazy things going on" to refer, I think, to your symptoms, and the doc interpreted it as events in your life, stress causing events and so on. However, he said:
"If there are truly "crazy things going on", these symptoms may represent your body's reaction to the emotional stress. Good luck"
Does the doctor have any evidence that stress ever causes any of the following symptoms?
"...Sharp pains in my head, burning and tingling in my head, pain in the upper neck/bottom of head, constant dizziness even when sitting or lying down, sometimes my lips feel as though they are drawing up, my hands are numb EVERY MORNING when I wake up and seem to feel 3 times their size(goes away after a few minutes), have had numbing/tingling in all parts of my body at one time or another (including my tongue), I have a head tremor, sometimes my legs feel very heavy as if they were filled up with cement. "
Why do doctors feel authorized to say A may cause B without empirical support only when A is emotional stress. Note that he also interpreted "Crazy things" in a way that implied the emotional stress, which you never indicated, just when he needed it to make this diagnosis! Neat, huh? This is how bias works. Study, children, study.
Similarly, if the other docs said you had anxiety, did they treat you for it? Did they get your "worked up" for it? I bet not. To my knowledge, anxiety disorders are measurable and include a general feeling of anxiety, obsessive or compulsive thoughts or actions (neatness, handwashing, etc.), uncontrollable phobias (of cats, heights, leaving the house, etc.), panic attacks (while driving, etc.), and maybe others. Certainly not the symptoms you describe above. If these symptoms don't seem to describe you (at least ONE of them!), then you probably don't suffer from an anxiety disorder. (I'm no doctor, of course; if you think you might have anxiety, check with a much better source than me!) Also, if anxiety were a cause, I would think a Xanax would alleviate the symptoms, at least partially. I bet it wouldn't.
To my knowledge, emotional stress is not known to cause physical symptoms without an intermediate mental illness, such as depression, anxiety or schizophrenia (I am no psychologist, but I've heard the "stresscuse" too many times). These illnesses are measurable and in every case in which a doc suspects "stress" the patient ought to be referred for mental health diagnosis. In other words, if they think you are crazy, they should tell you so and proceed accordingly. Otherwise keep looking for a physical cause.
So it sounds like you may have Fibro, and Multiple Irritable Doctor Syndrome (MIDS) :) Which is worse...?
I am glad to hear that i am not the only one out there with these wierd symptoms. I am a 32 year old who had a baby a little over a month ago and since then I have developed leg cramps(drs ruled out blood clots) waking up with achy, tingly fingers mostly left side, tingling on bottom of my feet and toes, severe headahes started a couple months ago but have gotten very bad the past week or two-I have them from time I wake up til I go to sleep, wake up with them. They get worse if I move my head. I just had a CT yesterday for headaches. Have an appt with my PCP tomorrow to review CT-I made the appt. Nothing helps the headaches. I also have developed freezing toes, need to wear socks with flannel slippers to keep them warm. ANyone have any ideas what this could be? I looked up the pseudotumor ceribri but I am not overweight-do you have to be to have this? I do not have real vision problems but bright lights bug me, and occassionally a word looks funny-not blurry or double vision-hard to describe. Hope we can all find some answers soon!!
you do not have to be overweight to have pseudotumor cerebri. It is just more common in overweight people. If you suspect that you may have this condition than you need to first go to your opthalmologist for a very thorough eye exam so he can check for any visual loss or papilledema ( sweeling of the optic nerves, which is one of the major signs and risks of this disease. When your optic nerves swell that is what causes you visual disturbances and the pain behind your eys. Psudeotumor cerebri basically means " False Tumor" it is also known as Idiopathic Intracranial Hypertension" which stands for unexplained pressure in the brain. Basically your brain is not absorbing the cerebral spinal fluid as fast as it should for some reason and it builds up too quickly and causes too much pressure creating pressure on the nerves and optic nerves begin too swell and creates a risk of blindness. You also need to have a Lumbar Puncture to have you Pressure checked.
They will also want to do an MRI and with Pseudotumor Cerebri in order to be diagnosed all of your MRI's and CT scans must be normal and your Cerebral Spinal Fluid must come back normal as far as being free of bacteria suck as meningitis etc. But your Pressure levels must be elevated in order for your doctor to be able to clinicly diagnose you with Pseudotumor Cerebri. Now Most people with this also have The swelling of the optiv nerves (papilledema) but you can still have this and not have that so it's very important to see your eye doctor if you suspect that you have it. This is a very rare condition. Only 1-2 people in evey 100,000 people get it and it is 8 times more likely to happen in overweight women between the ages of 20-50.
But that doesnt mean that other people can't get it either. The medical workd really doesn't know what causes it yet. They treat mild cases with duretics and a water pill to help with fluid, the most common one used being DIAMOX. For the more severe cases there are surgincal procedures avalable where they can instal a Lumbar Shunt to drain the fluid from the Lumbar area to your abdomen or another procedure called an Optic Nerve Eye Fenestration where they make a slit behind the eye in the optic nerve which allows the fluid to drain thus allowing the pressure to release.
I have this condition that is the only reason why I am able to tell you all this. But you can also look it up on the web if you like. But if you really think you have it you need to see your eye doctor and tell him your suspicions and then tell your PCP and ask him to do a Lumbar Puncture and if your levels are elevated he will refer you to a neuro immediately.
Hope that helps you some. Good Luck.
I hope you are doing well today. Your symptoms are too much like mine. I have been having these symptoms for about 2 years. Sharp pains in head, upper neck pain, tingling in my head and hands, heavy legs (that only happened a few times), etc. I have also been having pain in left shoulder and upper left arm (burning).
I was put on Paxil for depression for about a year. Symptoms were still there.
Someone mentioned Perimenopause... I even thought that, some of my symptoms seemed to be worse during period. Docs said I was to young, I am 36.
I have been to many doctors with still no answer in sight. I did have an MRI done last year that showed some area that appeared to be demyelation(sp?) which is indicative of MS (which two of my cousins have), which is kind of scary. It is frustrating not to know what is going on with your own body. I hope you get some answers soon.
Hi. I know how you feel. I have a cousin with MS also. I would feel MUCH better if I could just have a CAT scanor an MRI done. Maybe I'll have better luck when I get back to the States. I don't think you're ever too young for perimenopause. The reason I say that is because I was watching OPRA and they had a specialists on there that wrote a book on menopause. She said every woman is different and some start perimenopause as early as their 20's. Anyway, good luck to you!
Hi, did you get my email? I sent it last week sometime with the title wierd symptoms-headaches. If you did not get it let me know and I will resend it.. How have you been feeling? What exactly is MS? We don't have a family history of that. Do you keep a journal of how you feel? If you do, do you notice any patterns to your ill feelings? Well let me know if you got my email or if you would like me to resend it..
HI how have you been feeling? I still haven't gotten your return email... Anyways, I haven't been feeling the greatest these past couple of weeks and experiencing heart palpitations... I won't get the results from the tests they did until friday or monday... But anyways I have a friend who is a nurse and as I was telling her some of my symtoms she said it sounds like diebetes.. I go tomorrow to test for that.. Have you besides from the symptoms mentions above gained or lost weight quicker than usual in the past year, have to urinate alot, feel extremely hungry, have mood swings, itchy dry skin and extreme thirst, diareha or constipation, numbness/tingling in extremities and fatigue? Last year when I first starting feeling crumby I lost alot of weight (well 5 pounds) but I am short an thin anyways so 5 lbs on me is like 20 lbs, In the past month i have gained 10 pounds over a three week period, which I was happy with cause I needed it.. Also last year when I first started going to the doc I had the headache, symptoms of irretable bowel syndrome, mood swings, fatigue, weight loss, and numbness in arm which all mimic anxiety or depression.. If diabeties isn't caught early enough or left untreated it can cause heart problems, stroke, kidney falirue and even loss of vision. When I was in high school I was tested by a military doctor and he said I was borderline dieabetic so to keep on eye on it.. When my doctors ck my blood sugar it always comes back in the higher than normal range but I guess not high enough for them to warrent further investigation.. Which really upsets me because if it turns out that this is what i have I am afraid it has gone unnoticed for so long that it is causing more serious problems... Our health profession is very sad.. Sorry this is so long but I wanted to make sure you got this and not risk emails being lost in cyber space... Maybe this will help..
As a matter of fact, I have had all those symptoms. The irrital bowel syndrome is REALLY acting up lately. I, too, have high sugar which the doctors say is "ok"! My mom has diabetes and her father had it too. I guess, after hearing this, I will push the issue. Thanks a million! I hope you are felling better. I've had some really good days little, mixed with a few bad days. It's been nice to feel normal for a little while. Try to email me again. (***@****) Take care!
Hi to all! I would like to share some things that have happened to me recently, but need to start at the beginning. In 2000, I was diagnosed with Degenerative Disc Disease and had herniated discs at C4, 5 and 6. My neurosurgeon recommended Anterior Cervical Fusion - and I agreed. The surgery was uncomplicated and appeared successful. 2 days post-op I had what I thought was an allergic reaction to Demerol and landed in the ER - symptoms were lightheadedness, a feeling of "out of body" experience, difficulty breathing. When the paramedics arrived my bp was 150/110 - very high for me as mine normally runs 110-114/70. The ER ran IV and cleared my symptoms. All was well until January of this year. Preparing to teach CPR I suddenly felt "weird". My hands and arms went numb, ears started ringing, mouth went numb and I felt lightheaded. I tried to control the symptoms by sitting down. When I stood up, I felt an incredible pain in my upper chest/shoulder area and immediately went to the ER (I work in a hospital). My bp was up - 147/110, but the EKG showed all was fine. While laying in the ER, my bp was all over the place - it flew sky high and they gave me nitroglycerin and then it bottomed out. The cardiologist sent me for a stress test - that is truly a lot of fun!! - it showed nothing. After 8 hours in the ER all they could tell me was they thought is was referred pain caused by my back. So.....off for another MRI and to the neurosurgeon. Because of the titanium bar put in place for the fusion, the MRI showed too much artifact (shadows) for my MD to diagnose any compromised areas. He sent me home to start traction and I was told that to accurately diagnose a problem I would need to undergo a myelogram........needless to say, I wanted to do everything I could to avoid this test. In the meantime, I visited my Primary Care MD for my annual physical. She knows me and my job very well and suggested that part of the symptoms could be caused by STRESS and ANXIETY. She prescribed Paxil. She also ran a complete CBC, Metabolic Panel, FSH, TSH and LH tests. All menopausal tests came back negative - my CBC did show high MCV values - indicating enlarged red blood cells. Next - on my way to speak at a medical conference, I was riding in a car and working on a laptop. Suddenly, I felt as if I was going to literally "burn up" from the waist up. My head felt as if it was going to explode. I had severe pins and needles in my arms and hands and my mouth went numb. When we finally cleared traffic and stopped, I called my Primary Care and she informed me that Paxil sometimes has those side effects and it just depends on how "much you can take". I stopped taking Paxil that day. Everything was fine until Tuesday of last week. I was working in the office - nothing particularly stressful happening, same old thing. As I turned to leave the office, I got that same terrible feeling - hands/arms numb, mouth numb, feeling of "going out" and went to the front office to sit down. As long as I kept my head between my knees I felt OK. I was taken to the employee health clinic and given Benadryl. Once again, they thought it was an allergic reaction. The Nurse Practitioner said I was hyperventilating and told me to breath into a bag for approximately 3 minutes to get control. Immediately when I stopped breathing into the bag, I couldn't breath at all. I could feel the air going into my nose and out my mouth, but it was not going into my lungs. They rushed me to the ER - same thing - possible anxiety attack, although they did run a CT scan to rule out stroke and and EKG because I was experiencing some chest pain. I was sent home with instructions to take an aspirin everyday and Excedrin Migraine if symptoms presented because they now think I'm having complex migraines. I saw my primary care on Wed. - my CBC still shows high MCV and she keeps telling me to take B12 and Folic Acid (which I've been doing since February) and I visited a neurologist on Friday who says there is definitely something wrong - he has so far diagnosed cervical radiculopathy and sleep apnea. I go for a sleep test on Wed. and Saturday of this week. I am so tired of this........I know there must be a simple explanation. Anyone care to try??
I can relate to your weird symptoms. My own weird symptons started a year ago. I have gone from one doctor to another, they all say something different. I've been told TMJ,TMD,sinus infection,ear infection,migraine headaches,intercranial hypotension, low pressure headaches,neck spasams, etc. I have fibromyalgia, but this has never been mentioned as a cause of these present symptoms. I have had CT, MRI (several) and a myelogram, I am not glowing but probally should be. My nerosurgeon thinks this has all come from the myelogram I had a year ago in March. My symptoms are headaches, blurred vision, jaw pain,ear pain,neck pain snd spasms, sensitivity to light, unsteadiness, and the most strange symptom I have is that I can't wear hats, rubberbands, rollers, MY GLASSES, or anything on my head. I can't stand to lay my head on a pillow. There are places on my head that when compressed starts off this unexplained headache and blurred vison, my teeth even hurt. My neck is also very sore during this time. I can't do much of anything anymore. I also have several disk herniations, C5-6,T7-8,T8-9,T9-10,L1-2,L2-3,L3-4,L4-5,L5-S1. Maybe I'm crazy but I think alot of my problems are coming from these disks. I know its not female related I had a complete Hysterectomy in 2000. These headaches of mine feel like someone is blowing up a ballon in my head and if I could just pop it to relieve the pressure I would be okay. By the way this all started the night I had my myelogram. The first week I couldn't stand up, I was in the bed the whole time. I am going to search and research until I am satisfied that there isn't something that can be done for me besides pain pills (that have no effect)and muscle relaxers(also no effect,blood patch,(worked for two days).The doctor is now telling me I have to stop caffiene and nicotine, I have smoked for 25 years and drank coffe,tea, soda most all my life. I think its strange these habits would effect me now. I would love to hear from anyone who has had low pressure headaches caused by caffeine and nicotine. Don't get me wrong I know very well the dangers of nicotine but it didn't cause these symptoms. I hope that anyone with symptoms that just don't go away will keep trying to get answers for their problems, I know I will if I live long enough to do it. I go back to the nerologist at the end of the month. He had mentioned doing another head MRI, with gadolinium this time. Good luck with your problem. Try to keep a sense of humor.
Do a web search for Mixed Connective Tissue Disease and/or Unclassified Connective Tissue Disease (MCTD, UCTD). You'll be suprized to see that many of your symptoms are listed. You need to see a GOOD rheumatologist. If you are female you may have the problem I had for several years - the doctors assume that a woman with multiple problems is neurotic, while a man with the same sypmtoms is put it the hospital.
As for your head tremor, I don't find it listed as part of CTD. But essentual tremor disorder is what I finally was diagnosed with, after a change in neurologists! And to my shock, it can be treated with medication. (The meds only help partially for me, but I have tremors in hands, head, mouth, and eyes [nystagmus].) I find it interesting that you, like me, have symptoms of CTD and the tremor disorder. I say this because I also have trigeminal neuralgia, numbness and tingling of head, etc., but only found out when doing a web search on a weird fingernail symptom that I came across MCTD/UCTD symptom lists that included these things. While I have been diagnosed with UCTD neither my rheumatologist nor my neurologist mentioned (and I think they don't know) that CTD can cause these things.
Be sure to print out the symptom lists you find, highlight your symptoms, and take it to the doctor when you go.
I followed your discussions and all along the way I though at least some of your symptoms sound like high blood suger. Headaches, IBS, or pins & needles are these days always an indication of a blood suger over 5,5. High BS causes muscle pains usually in my right arm & low blood suger lameness in my left arm.
I understand that not all Diabetics have these symptoms. In a large group of diabetics one young man mentioned that he suffered muscle cramps. Everyone looked surprised, including the doctors.I was the only other person who knew what he meant.
Symptoms of IBS disappeared completely after going on insulin.
Arn't we a bunch of sickies!
I see I am not aloan in so many sicknesses.
I have just had a spinal x-ray, and have discovered I have a severe scoliosis and degenerative neck damage. this I am told can be linked to all of my other problems!
Shall I list them!
Constant back and muscle pain
numbness, loss of sensation
constant headaches and migraines
peti mal epilepsy...absense seisures, light sensitivity
irritable bowel syndrome or is that crones disease...they can't seem to make up their minds! One minute I definately had crones, and I was on steroids for about a year, then I didn't have it! I'm sure the steroids didn't do my back any good!
Burst appendix, adhesions
bladder infections and reflux since birth
I'm sure I've missed things...but you get the general idea!
I feel like a walking disaster area..and my docter just laughs...you have to realy! He says I'm a complete mystery to him.
My mothers explanation for it all is that I was her first baby...and she mucked up!
Oh...and anxiety disorder! Do you think this could be because my body is tottaly stuffed! There is no apparent trigger...I could be relaxing in front of the tv and all of a sudden I feel like I'm having a heart attack! Great fun...you should try it some time!
If you would like to chat about our pathetic state of affairs some time my e-mail is ***@****
thanxs for reading this rediculously long list of symptoms!
I have not read all the responses posted but, have you heard about Lyme disease? It is caused by a tick bite, usually you would develop a red rash after the bite but I did not developed it. The tick is very tiny and most people do not feel the bite. I used to leave in an non endemic area, even so I got the disease. With constant treatment (doxycicline, IV antibiotics and flagyl) I am doing better.
If you do a search, look for Dr. Burrascano site.
It has been very hard to find what was going on...lot of praying and lot of searching...Good luck to you!!!
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