weird symptoms

[VAgirrrrrl]

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.

[chd1122]

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.

[VAgirrrrrl]

Thanks for the website.  I'm going to check it out right now!!!!

[JessF]

Hi everyone,
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!!

[Axel]

Hello everyone,

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...?

[smokeater]

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?

[smokeater]

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.