Discussions By Condition: Nerve conditions

so many symptoms but no diagnosis...GGRRR

Posted In: Nerve conditions 48 Replies
  • Posted By: emthejayne
  • January 12, 2007
  • 11:13 PM

Hello all, it's amazing reading through these boards just how many people are in the same boat. Unnatural symptoms, yet a diagnosis is not forthcoming :-/ It's not only extremely frustrating, it's depressing! I started getting weird symptoms about 10 years ago. It started with tingling/pins and needles in my left arm. I then got chest pains. Then came the pins and needles/numbness in both left arm and left leg. Then came the muscle weakness. Then came the tickly/itchy muscles in both legs/arms. Then came the fatigue. Then came the headaches. Then came the visual disturbances. Apparently, there's nothing wrong with me!! I really don't think it's normal to feel about 90yrs old when I'm only 38! I've had MRI's, full blood check and they came back normal. I went to my GP again recently as I had the visual disturbance and my head feels "swimmy". So much so, I don't feel confident enough to drive. Another problem I get fairly regularly is bladder problems and really bad lower back ache (which I presume is my kidneys). My GP didn't seem overly concerned about that but took my urine sample anyway - still waiting the results of that. My GP is once again referring me to a neurologist. I was previously prescribed amitriptilyne for the pain. Any ideas would be most welcome!! It's quite alarming just how many people have the same symptoms that aren't being diagnosed. Some vindication would be a blessing wouldn't it?!

Reply Flag this Discussion

48 Replies:

  • You could be writing about me! I started with left arm pain and tingling a year and a half ago. Its gone on to affect my left leg, feels heavy, knee down and tingles. The left side of my face gets tingles, and I get electrical like sharp pains through out my body. But...MRI, EP, EMG, bloodwork is all normal. I had an ultrasound on my carotid arteries also and a stress test to rule out heart/artery issues. Doc has me on gabapentim now for pain. Good luck to all of us!!
    Anonymous 42789 Replies
    • January 13, 2007
    • 02:20 AM
    • 0
    Flag this Response
  • I have quite a long list of problems too (About 20 or more). I don't think there related to yours. Sorry!!! But, the doctors cannot find out what is wrong with me. I do feel how you feel though. It is so sad that all of us are in the same boat. Do you ever feel like the doctors do not really care. It is as if we have so many problems they do not want to deal with it & just brush us off. Hope you find out what is wrong & keep us updated. Just sharing thoughtsThanks for listening.
    Anonymous 42789 Replies
    • January 14, 2007
    • 08:19 PM
    • 0
    Flag this Response
  • I will share some advice with you that may have saved my own life, remember first that Doctors like car mechanics there are good ones and bad ones, I went to a doctor for 7 years and he made me feel like a hypercondreac and more or less blew me off. My husband said look either keep waiting for this guy to give a ***n or go to another doctor and I did I asked around about who was respected and I found a GP and I walked in his office and said help me he looked at me like I was a quack and then looked at the drug regiment to make a long story short I had a tumor and after I was treated have lived pretty darn happy life since unfortuely waiting so long did have some set backs but I over came them. Any way the thing about a general pract is that they look at the big picture while a specialist just looks for what he knows. I suggest square one and screw that doctor who acted like you were putting him out while he collected your money they are not gods. Take control of your health and get answers and if you find your ok thank god you not dying and work on fixing your problem and making your quality of life better.
    annemarie 2 Replies
    • January 14, 2007
    • 10:26 PM
    • 0
    Flag this Response
  • look up hyperparathyroidism, it can cause those symptoms. It is checked through calcium levels I believe.
    Anonymous 42789 Replies
    • January 16, 2007
    • 00:32 AM
    • 0
    Flag this Response
  • Get western Blot test for Lyme Disease.This sounds so much like what I had, and was dx'd with fibro!! At first they thought I had MS. But it is Lyme from a tick bit from more than 20 yrs ago. Could be thyroid , adrenals or low magnasuim or other minerals. Go to lymenet.org and read there. Hope this helps.
    Anonymous 42789 Replies
    • January 17, 2007
    • 00:48 PM
    • 0
    Flag this Response
  • Research on Toxic and Candida Overload.
    Anonymous 42789 Replies
    • January 17, 2007
    • 02:17 PM
    • 0
    Flag this Response
  • :) Hello There; you must be the ggrrr's well then, what to do what to do? Might Try This; http://www.wellmark.com/ Best Wishes!;)
    hogndog 426 Replies
    • January 17, 2007
    • 03:33 PM
    • 0
    Flag this Response
  • sounds so much like me. I would love to know what the dr. tells you. In the mean time look up Lupus.Get better.!
    lizzi9983 35 Replies
    • January 17, 2007
    • 05:01 PM
    • 0
    Flag this Response
  • ;) Hello Again; in my case my body fills little by little, with fluids. At present i'm waiting for an office call to get an appointment. Then they'll drain the fluids out & i'll wait a couple months or so & then do it again. Oh Boy, i can hardly wait! You know what? It's all because i'm having a difficut time adjusting to a salt free diet; then theres the meat thing. I'm allowed to indulge two times a week & then the portion is about the size of a pack of smokes. Yes it's rough, but then got to do it elsewise, it's back to get a fluid drain. Are we having fun yet? Well you wanted to know what my doctor said & that's what he says. In the mean time you ear healthy & i as well. Good Luck, nice to chat with you!:)
    hogndog 426 Replies
    • January 17, 2007
    • 06:03 PM
    • 0
    Flag this Response
  • yeah that sounds about right. I hope you will get better and nice talking to you too.
    lizzi9983 35 Replies
    • January 17, 2007
    • 06:43 PM
    • 0
    Flag this Response
  • hi all, thank you for your suggestions. I did infact mention to my GP that I thought looking into the endocrine system might be worthwhile - my sister has been told she needs an operation on her parathyroid, my other sister suffers badly with glands - abcesses etc so it's not beyond the realms of possibility that it's something like that - his answer was that I ought to see the neurologist AGAIN as the systems are more neurological - he seemed unwilling to explore the possibility of thyroid/adrenal etc as the standard blood test came back normal....so did my sisters! :-( it's so frustrating. My body....my life.....it's important to me! As I'm sure most of you will agree, it's frightening when you feel so wretched some days but noone can tell you why. It's disheartening to not have the energy to be your usual self with your family but noone can tell you why. The sad thing is, is that you sort of get used to feeling so awful! Surely that's not right? It never ceases to amaze me, reading through these posts, just how many people feel low and despaired yet the search goes on as to what's wrong :-( I hope we all get to the bottom of what our particular problem is. In the meantime, it is comforting to know there are other people in the same boat. You feel less of a fraud! Thank you again for your suggestions. xxx
    emthejayne 2 Replies
    • January 17, 2007
    • 08:37 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Look Up Neuropathy
    Anonymous 42789 Replies Flag this Response
  • :) Hello i've found the information you were looking for; at least there is no advertising as i thought there might be. http://www.neuropathy.org/site/pageserver ;)
    hogndog 426 Replies Flag this Response
  • :) Hello i've found the information you were looking for; at least there is no advertising as i thought there might be. http://www.neuropathy.org/site/pageserver ;) You will need to click on the letter head for application.
    hogndog 426 Replies Flag this Response
  • Hello,You said you are 38 and if you are a woman and also somewhat overweight, I would suspect Benign Intracranial Hypertension (formerly called Pseudotumor Cerebri). You can look it up but the disorder is very poorly researched and it is more common that what the literature reflects. My sister has it and has severe headaches and visual disturbances (thought to be the "classical presentation") but I have had the visual disturbances (and neurological symptoms more like yours) but no headaches. We are not sure that I have it but it is the most likely suspect at this point. Because it is a rise in cerebrospinal fluid (or a failure to flow or drain normally), the symptoms would have to vary according to which parts of the brain are being pressured by the fluid. The fluid/pressure also changes, therefore the symptoms improve at times and worsen at times..unlike a brain tumor that is more "fixed." The only way to diagnose BIH is by ruling out other dz and by a lumbar puncture, unfortunately, and so far I have refused to do that. Avoid products with vitamin A (even carotenoids) for a while, stay out of the sun and eat really low salt and see if you improve.Hello all, it's amazing reading through these boards just how many people are in the same boat. Unnatural symptoms, yet a diagnosis is not forthcoming :-/ It's not only extremely frustrating, it's depressing! I started getting weird symptoms about 10 years ago. It started with tingling/pins and needles in my left arm. I then got chest pains. Then came the pins and needles/numbness in both left arm and left leg. Then came the muscle weakness. Then came the tickly/itchy muscles in both legs/arms. Then came the fatigue. Then came the headaches. Then came the visual disturbances. Apparently, there's nothing wrong with me!! I really don't think it's normal to feel about 90yrs old when I'm only 38! I've had MRI's, full blood check and they came back normal. I went to my GP again recently as I had the visual disturbance and my head feels "swimmy". So much so, I don't feel confident enough to drive. Another problem I get fairly regularly is bladder problems and really bad lower back ache (which I presume is my kidneys). My GP didn't seem overly concerned about that but took my urine sample anyway - still waiting the results of that. My GP is once again referring me to a neurologist. I was previously prescribed amitriptilyne for the pain. Any ideas would be most welcome!! It's quite alarming just how many people have the same symptoms that aren't being diagnosed. Some vindication would be a blessing wouldn't it?!
    Anonymous 42789 Replies Flag this Response
  • I have a serious problem and I need advice.I`m 24year old female that works out 5 days a week, eats very healthy, smokes 10ciggarrettes a day(my bad habit of 10years) I have used a lot of cocaine last year, quit now, and I do not even drink alcohol.I have had numbness in my right pinky finger going up to the elbow in a straight line, pains in my right leg, loss of balance,not from just getting up, but walking I will suddenly feel weak in the right side. Pains in my right temple, my pupils dialated so large before I almost passed out, blurred vision in right eye, dizziness, tingling in my neck, face (all the right side) very weak right side. I do not have anxiety, I feel calm, often times I ignore these symptoms. Tests don:CT, all bloodwork, No MS, MRI, all were good.My life is affected and I need to know what I should look for. Doctors won`t give me an Arterieography, they say iodine causes strokes. I feel there is something wrong here and it`s serious. Everyone says I`m ok. I think NO.
    Anonymous 42789 Replies Flag this Response
  • Posting here on the fly...because I care that people are aware of and look for help with neurological symptoms that seem unexplained...Chronic Borreliosis (lyme disease) can cause neurological symptoms. It mimics over 300 other diseases. Once introduced into the blood stream it quickly moves to tissues and organs to do much damage. Central nervous system involvement is common. Drs don't test properly, unless they specify they are LLMD's (Lyme literate MD"s) Look on Lymenet.com for more info or find any lyme related site.Also, www.neurotoxins.com has a visual test and makes recommendations re: neurological symptoms. Relates to borreliosis. Best wishes to all. Best advice, be your own best advocate, Drs. are not God, don't know everything...keep looking till you find someone to work with you.Diane in MIredhat@tc3net.com
    Anonymous 42789 Replies Flag this Response
  • try this http://www.chronicneurotoxins.com/
    hogndog 426 Replies Flag this Response
  • I had many symptoms that were similar to yours including headache, the swimmy feeling, vision disturbances, itchy/tingly..almost like ants crawling on you...as well as difficulty swallowing/lack of gag reflex, cough syncope (Passing out after/while coughing), orthostatic intolerance (blood pressure drop based on change of position), etc.The symptoms started when I was in high school and I lived with them until I was 45 when I was diagnosed with a Chiari Malformation Type I. About 10 years later, my younger brother was also diagnised with a Chiari Malformation Type I, although his was not as pronounced. In my case, the radiologist identified the Chiari Malformation because the neurologist asked that he look for one. In my brother's case, the radiologist did not identify the Chiari Malformation because he was not asked to look for it. Since our symptoms were similar in many ways, I contacted my brother's doctor and asked that he consider a Chiari Malformation since there is evidence that there is some genetic component to this malformation. When the radiologist rechecked the MRI, he found that there was indeed a Chiari Malformation.Many doctors are taught in med school that a Chiari Malformation is a zebra and they should be more worried about horses. So, unless there is some reason to suspect a zebra, they don't consider it. If you have had an MRI already, it may be easy to have your doctor check to see if Chiari can be diagnosed from it. If so, then find a neurologist/neurosurgeon who has extensive Chiari experience to determine what you best course of action is.For many years, I felt like I was crazy because I had so many symptoms, but no reason for them. Some doctors suggested that I see a psychiatrist..assuming that the problem was all in my head. They were right about it being in my head, but referred me to the wrong kind of doctor.Best of luck with getting a diagnosis.
    Anonymous 42789 Replies Flag this Response
  • http://i171.photobucket.com/albums/u298/hogndog/cbmig.jpg This is going to be a rather tough cookie, you see I have never heard of this condition before. All I can tell you is I will try and find some sort of answer. So hang in there I'll be working on it.In *****t, Lee
    hogndog 426 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.