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    Old 05-08-2002, 08:32 PM   #1
    lourehha
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    Question Need Help Coping With Undiagnosed Symptoms

    For the past 9 months I have been experiencing various symptoms - vertigo, dizziness, loss-of-balance, numbness and tingling in my hands, night sweats, legs jerking at night, face and arms and legs trembling during the day, neck pain & pressure at the base of the skull, with the neck area getting very hot at times, involuntary eye movements, inability to perceive distance or perspective of objects coming at me on the highway, speech difficulties at times, and comprehension difficulties - at times. I have had 3 MRI's in the past 7 months, with the first one showing white spots on the brain - I was told I had a stroke. Later trips to the hospital and MRI's did not show anything new, yet I was very ill. I was admitted for Brady-cardia/ Tachy-cardia symptoms. I have Hypertension/ High Cholesterol for which I take med's. I have spinal-stenosis [ narrowing of the spinal column ] both lumbar and cervical. I have been told that I have erosion of the Myelin sheath around the nerves in the spinal chord where it enters the brain. But so far, I have NO DIAGNOSIS for a disease!!

    I have been receiving therapy for my depression from all of this, but it only helps just so much. I still have times when I want to just end all of the pain and suffering and endless doctors and tests.

    I was hoping to hear from others who also are suffering similar symptoms and what you are doing, or trying to do, to cope with it all. Any replies will be greatly appeciated.
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    Old 05-08-2002, 10:38 PM   #2
    Jeannie-Marie
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    I'm so sorry to hear you're feeling badly. It feels even worse when you don't know what it is. My doc says some of my tremors might be from my anti-depressants. Good luck with your search.

     
    Old 05-09-2002, 10:46 PM   #3
    lourehha
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    Dear Jeannie-Marie,

    God Bless you for caring. As I'm desparetly trying to hold on while, Dr.s can't seem to find a diagnoses to treatme. Know that I will keep you in my prayers and I do hope you feel better real soon. I have heard that anti-depressants can cause tremors. I have also seen this with patients I use to take care of before I took ill. Please stay in touch and let me now from time to time how you are doing. Again, God Bless Lourehha
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    Old 05-15-2002, 11:51 PM   #4
    mgd2962
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    Hi Let me first say please do not feel alone. I personally have spent the past year, going thru this undiagnosed stage. I have had alot of the simular symptoms and some of my own. I am living in las vegas but originally from Michigan. I saw 2 doctors and 3 neurologist in town and no one new what to do. I had mri's along with many other test. Only thing all of mine came back normal and this made the diagnosing process even harder. My symptoms continue some days better than others. I was refered to UCLA in November and they have been absolutely wonderful. I have a probable diagnosis now of MS. However this was just to help me get my social security disability, as I am unable to work. I have been on lortab and neurontin which help some, I exercise weekly in the pool. And most importantly I keep as positive as possible. They are testing me now for metabolic disease and muscular disease along with some genetic testing. It is important for you to get 2,3,4 opinions or how ever many it takes until you find a good doctor to listen, keep a journal of your daily symptoms and activities. Be your own advocate and research. And like I said stay positive. The frustration of not knowing is the worst part, second to your pain and discomfort. And these disease, with all these strange symptoms are tough to figure out, even by the best of physicians. I wish you well. If you have any questions, or just want to talk. Please email me anytime. Michelle

     
    Old 05-22-2002, 08:44 PM   #5
    lourehha
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    Dear Michelle
    God Bless you for replying to me. I apologize for taking so long to get back to you, I had sent several messages back to you, but for some strange reason I ke4pt getting disconnected from the Internet every time I attempted to post the message. I hope it reaches you this time. It was really getting weird.
    I hope you are feeling better. And, I 'm happy that your Dr. gave you a possible diagnosis to help you get social security. Most Drs. these days won't even do that much. And, what are you suppose to do to get help, when your to ill to work, and can't get insurance because you can't work.
    You are so right. Alot of my symptoms also sound like MS. White spots have showed up on my M>R>I> many times. At the eyes ears and nose Dr. they did what they call a Dizx test on me and it showed that the problems I'm having is caused by a cebreal problem. They want me to go back to the neur. and request a spinal tap done next, to see if the white spots show up in the fluid also, which will confirm if I have MS. In the mean time on the 28th of May I have to have a pace maker put in because my heart rate is to low. The cardiologist is hoping that will help with some of the dizzyiness.
    I'm so sorry you have had to go through the same frustrations of trying to get a diagnosis. Drs. don't realize what this does to patients. They can't treat the unkown, and We Can't Fight the UNkown. When we are hurting and can't live normal lifes because of it, we can't just ignore our ailments like they don't exist and go on about our living.
    The Health Board has been a help for me to find out that I'm not alone. There are so many others like us. It helps me to keep my mind as busy as I can. That's hard to do. And I have a burning desire to somehow make it publicly known about how UNDX. takes a mental toll on people's well being. That's something that never seems to get addressed in the medical profession. Instead, if Drs can't find out whats wrong, you automatically are diagnosed with depression. Of course, common sense should tell the medical profession that if your ill, nobody knows why, and you are not being treated to get better, thats enough to depress you. It seems like these days the medical field is book smart, and more and more common sense stupider. Perhaps some day when I get feeling better, I'll be able to write a book about all this.
    I will keep you in my prayers. And please do keep me posted. People like us have to stay together, and be strong for each other RIGHT? God Bless Lourehha
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    Old 06-03-2002, 04:21 PM   #6
    Allen B
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    I thought it sounded like you must have MS until I read that the spots on your MRI are not where MS spots are typically located. I have had trouble with tremors while the docs were trying to treat me with an anti-depressant drug as well. Stopped the drug and the tremors were gone. Tried the drug again and they came back after just one dose. Bad stuff for me I guess. My MRI shows one spot almost in the center of the brain where MS spots normally grow. They have not performed a LP on me yet but that may be next if I don't figure out something soon. Will you post what you find out on your LP? Thanks.

     
    Old 06-19-2002, 07:59 PM   #7
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    Dear Allen B.
    Thank you for your response. Recently a specialist informed me that a lot of my problems have been coming from damaged nerves in my cervical area due to degenerative disk decease. He said that can cause a lot of problems. That's why I have sudden drops in my blood pressure, aqnd the dizzyness I suffer all the time. Its unopeerative because of serious risks that would be involved with that type of surgery. However recently I also found about a decease I never heard of, thanks to information shared with me. (See the next message below yours) It describes a lot more of the symptoms I've also been having. It might be helpful to you. I'm getting ready to answer that message now. I'm not sure of the spelling, but if I'm not mistaken Its spelled Chirad. Double check, but you will see it on the next message to me below yours.
    Good luck. I'll certainly remember you in my prayers, that your guided to get the answers you need.
    Best wishes, Lourehha
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    Old 06-19-2002, 08:09 PM   #8
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    Dear Carlette,
    God Bless you for sharing your information with me. I looked up the sight you gave me, and then I looked up some more on it.. You are so right. I Couldn't believe how many symptoms I have that fit with this decease. I never heard of it. I'm so glad you shared it with me. Now to try to find a Dr. who will be willing to check it out with me. It is so difficult dealing with the drs. I have found that they get intimadated by presenting them new information. On rare disceases, I would think they would appreciate any information they can get that might help a patient. I guess I need to find a new approach, cause mine just isn't working. How did you approach your Dr? I need all the help I can get. Again got Bless you for responding with the input. Please stay in touch. Lourehha
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    Old 06-20-2002, 12:24 AM   #9
    zatura88
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    QUOTE; I have been told that I have erosion of the Myelin sheath around the nerves in the spinal chord where it enters the brain. But so far, I have NO DIAGNOSIS for a disease!!

    I have been receiving therapy for my depression from all of this, but it only helps just so much. I still have times when I want to just end all of the pain and suffering and endless doctors and tests.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~
    First of all,I would like to express how sorry I am for what you must be experimenting. What captured my attention was the information regarding erosion of the myelin sheath because these are the glial cells that wrap around neurons, acting as an insulation that protects the neurons so the neural transmittors can work at proper and sufficient speed. A prominent sign of seriousness of the erosion state is faulty reflexes because without the myelin sheath (Insulation) reflex pathways would interfere with automatic reactions and could explain twitching. I would ask the doctor about prevention drugs for deterioration and, or prevention of Alzheimer's because that is unfortunately connected with the deteriorating process. Also, ask them about subsituting cholesterol medication with a proper diet which could eliminate a drug taken and also side effects of one or more drugs could be setting off the current condition. The sad thing is that fixing the damage that is done is unlikely yet, prevention is the utmost and relevant thing right now. I would also advice seeking out research clinics or brain injury centers, even though it's not due to injury, they research the brain continually and offer free information packages by mail. Educating yourself and seeking prevention is the key, as well as researching herbal medicines such as saint John's wort or brain food herbal mixes might help you. However, the medical profession frown on homeopathy remedies because it undermines there skills and elimates prescription drug support. I wish you the best of luck in your journey toward a clear understanding because without that spectrum of light, the darkness prevents you to take control of the problem and that is the main thing right now. Push for answers or find a neurologist that can provide an answer. You pay for this and you deserve to know and you deserve the right to take control and prevent what is causing grief. Stress will only increase the symptoms and eliminating this stress will definitely aid in the symptoms. Illness management has a lot to do with state of mind. Best of luck to you


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    Old 06-21-2002, 08:34 PM   #10
    clementine
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    Have they performed an angiogram? How about a PET scan? Has anyone given any thought to a small AVM? arteriovenous malformation. Also, the drug Paxil can cause these symptoms. Do you have mitral valve prolapse? Have you gone to a big medical center? Mass General in Boston is really good...they have more technology than just about any health care center in the United States, their neuro team is tops...Let me know, I sympathize with you from the bottom of my heart...I have health problems and it is very difficult to get any health care professinal to really listen to you.

     
    Old 07-07-2002, 10:41 PM   #11
    lourehha
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    Dear Zatura, Sorry it has taken me so long to get back to you. I stayed with my daughter to get the past week. She has air conditioning. The weather here has been so hot, and with my circulation I had no choice but to get out of the heat.
    I am very sorry that you are also suffering, and now having to take the paxil for depression. But, I really do appreciate the sound advice you gave me.
    I wasn't suffering depression until I got physically ill, but Drs. don't want to hear that of course. On May 28th my cardiologist gave me a pacemaker, hoping it would help correct the vertigo. It didn't help, but at least he tried. It did take away the extreme weakness I was also suffering from, of which I am so thankful for.
    I can't seem to find a neurologist who will listen. I have MrI reports that shows a great deal of nerve damagfe in my neck. My Brain neurologist feels the dizzyness is coming from my neck. He can't help me because he only takes care of the brain. I took his advice and have went to two neurosurgeons who takes care of cervical. They said they can't help me and basically blew me off. I got mad, but that didn't do me any good. They still refused to listen. You are so right. I'm paying the Drs. and I reminded them of that, but even with that they didn't care. If you come up with any good ideas on how to get their attention please let me. I can't keep running all over the country trying to find one that does. I can't even drive to get to drs. because of all the dizzyness. I have to depend on my husband to get me. there. Even though my MRIS shows plenty, the neurologists acts like this is a big joke.
    In the meantime I have had to strokes, because my circulation is being shut off at the main artery in the back of my neck. That showed up on the MRI, and the brain neurologist saw it. He just can't operate on my cervical spine. I returned back to him, and his comment was, "I told you to go to a neuro who operates on the spine-- needless to say, I keep getting run around in circles. I'm exhausted from fighting a battle I can't seem to win. In the meantime I never know from one day to the next when I'm going to have another stroke. What away to have to live.
    I'm telling you these things to let you know, I for one, certainly can relate to what you are going through. Know that I will truly keep you in my prayers. And I'm so sorry you also have had to fight with Drs. God Bless you, and again I thank you for your advice.
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    Old 07-07-2002, 10:54 PM   #12
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    Dear Carlette,
    You are so right. I looked up Chiari. I never heard of it before. But, all my symptoms match. Even down to speech problems that comes and goes. I couldn't believe how my symptoms match. After reqading about it, I looked over my M.R.I. Sure enough, I saw what they were talking about. But Drs. here aren't recognizing it. Just like the information said, that most Drs. don't even know about it.
    Can you please tell me how to find a neurologist that does. I live in Pennsylvania. I'm afraid if I don't find a Dr. I'm going to have another stroke, because its pressing against a major artery in the back of my neck. I have terrible pressure pain all the time because of it. I have complained to all my Drs. about it and have gotten no where. The Dr. who took care of me with my strokes saw on the M.R.I. that the blood flow in that artery was being cut off, but he couldn't understand why. He has never heard of this disorder Chiari.
    I would really appreciate it if you can advice me on how to find a Dr. that does know.
    And God Bless you for recognizing my symptoms, and sharing this info with me. Lourehha

    [This message has been edited by lourehha (edited 07-08-2002).]
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    Old 07-13-2002, 07:36 AM   #13
    deadlysunrise
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    i had migraines for yrs and had ct scans that showed nothing (i'm only 22). about 2 yrs ago my head pain changed from the front to the back of my head and i started having severe nose bleeds, dizziness, weakness, trouble sleeping, fatugue, my hands and feet are always cold, my arms, hands, legs and feet fall asleep all the time, i have trouble with judging distances, focusing on things and with my short term memory. i had another ct scan 9 months ago that showed two calcified meningnomas within the posterior and medial aspect of the left cerebellum. i was told this was nothing to really worry about and i lost my medical insurance the next day so i was unable to reteurn to see that doctor or find another. i haven't been able to have any further testing and continue to go down hill... have u asked your doctor if they could have been calcified meningnomas (tumors) or calcium deposits?

     
    Old 09-14-2003, 05:14 PM   #14
    sergiom
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    deadlysunrise

    this really concerns me. i've been having symptoms similar to both of you, but i have no insurance so i haven't been to the doctor about it. but when you said you got your MRI back, your insurance was cancelled. was it because of the tests? thats really messed up...

     
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