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Strange symptoms
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Strange symptoms

I am a 39 yr old fe in pretty good health.
Known conditions I have are HBP, PCOS, cold urticaria and mild mitral valve prolapse. I have frequent headaches and am constantly fatigued. A few yrs ago I had a CT that was neg for the headaches.
I have been experiencing strange symptoms on and off for the last couple of years, but lately they seem to have gotten worse.
They are:
Tingling in my hands/face.
Slight tremor in my thumbs.
Left eye twitching almost daily.
Increasing clumsiness. I can reach for an object behind another object, I know the other is there, but I always knock it over. I do this all the time.
I've been having more and more trouble getting my words to come out. It's like my mouth can't keep up with my mind anymore.
Increasing forgetfullness. It's almost scary how I forget things now.
Varying degrees of muscle weakness/pain for no known reason.
Sometimes my extremities will feel numb (almost like vibrations), but it usually doesn't last more than a few hours.
My typing has gotten worse (The majority of my job is typing).

I have no known injury that would contribute to these symptoms.

With this I'm getting depressed/mood swings and afraid to go to the doctor. I am quite shy and feel that my symptoms are so small that I will get blown off.
Your opinion would be greatly appreciated and if you think I should go get examined it might be the push I need to do so.
Thank you.
Related Discussions
Avatar_n_tn
I do think you should see a doctor regarding this, and most likely a neurologist. These symptoms can not be localized to one particular area, and therefore more systemic disorders should be evaluated. Broad areas to have evaluated include connective tissue diseases, inflammatory conditions, and vitamin B12 dysfunction. A MRI of the brain may be reasonable to help exclude structural lesions. Good luck.
39 Comments
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You should get these symptoms checked out by a neurologist.  Don't be afraid to go to the doctor's office.  You'll get some clarification regarding the etiology of these symptoms.
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Thanks ontherecord. Deep down I know I should, I even started keeping a symptom diary for when I do get the nerve to go so I can remind myself what to say.
I also don't have them all the time, so I think I'm making something out of nothing. I tend to trivialize my problems when I do go to the doctor, but I've never been examined for these symptoms (except the headaches). I know it's fear.
The scariest for me is the thumb tremor because it happens when my hand isn't moving, which I know can be a sign of Parkinsons.
I also don't have a very good selection of neurologists in my area, so I will have to start looking outside my area. It's so hard to know who to go to.
Thanks again for your comments.
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Go to neurologychannel.com and there is a section called "MD Locator." You put in your state and the first 3-digits of your zip code and at the very least, you'll get the names of a few  neurologists in that area.  Any neurologist who is board-certified is presumptively competent.
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I know it can be scary to talk to some doctors, but please make yourself go.  Bringing a list of symptoms, meds both over the counter and rx and a list of your own questions, helps with proper diagnosis.   I have now been under the care of several specialist for the past 6 months and these tools helped to solve many of my issues and made it easier for communicating with my doctors.  Hope this inspires you.
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I cannot offer you additional help beyond others' recommendations to see a neurologist; but I can tell you that I once had EVERY symptom on your list. After the symptoms abated,  I eventually developed dysautonomia and chronic fatigue syndrome.  The neurologists never found much; they diagnosed me with "migraine phenomena."  I wouldn't worry about parkinsons....Seek help at least for peace of mind.

Lauren
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I agree with Lawn.  I also have had numerous symptoms like you and have seen a neuro and had very expensive tests done and thank God, they were okay.  I still have some symptoms but I am much better.  Try to read the book the Maker's Diet.  It will help you to live a lifestyle that enables your body to heal.  Best wishes to you.
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Thank you all for your suggestions and comments. It's comforting to know that others are going through or have gone through the same things.
Most days I just feel "out of it" and struggle to function, and it worries me that someday it will all be too much to overcome just to do something as simple as go to work. Then there are days I feel so "normal" and never want the day to end so I can feel good forever, but it never lasts. You all have been very encouraging, I can't thank you enough.
It will be interesting to see what the doctor has to say.

ontherecord, I went to that website and it seems that link is not working, but I will try another way to find one, thanks again.
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Avatar_n_tn
I just checked the site and it seems to work fine, so maybe give it another shot when you get a chance.   There are two good books out there in which you can find high quality neurologists in your area: America's Best Doctors and Consumers Guide to Top Doctors.  These should be available at your local bookstore (Barnes and Noble, Borders).
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Lauren,
I just wanted to ask how you were diagnosed. Just process of elimination? Your symptoms went away? Do they sometimes come back? Thanks for the information, it's been interesting reading about it.
I find it amazing that what I've read about Dysautomonia is so similiar to what I've been experiencing. Especially the HBP and MVP. I was told I have cluster migraines (I couldn't find much on migraine phenomenon to compare though).

ontherecord, I did get that link to work, thank you!
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Avatar_n_tn
You should go see your doctor and describe the problems you have.  It is good that you keep a diary so you can show the doctor; it will help you get the information across.  I know some doctors can be intimidating and in some cases arrogant and in some cases just plain stupid.  You just have to persist until something is done.  Do not be afraid to ask questions and get clear answers.  Do not be afraid to go to other doctor for second opinion.  

In my case the first doctor I saw passed off my health problems as being some bug and said go home and sleep it off.  This did not help.  Then he placed me on number of antibiotics which did nothing.  It was time for another doctor one that would run tests and find the answers and not just guess.  

Some of my symptoms were tremors hands, arms, eyelids, face and head.  Numbness in my hands and feet, no sense of hot/cold or pain.  Headaches, physical/mental fatigue, vision problems, memory loss
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Are you saying that you had 3 strokes?? Did I read that part correctly? Also, what do you mean that you were poisoned by your former employer? Did you collect Workers Compensation or sue your employer for negligence? This has to be one of the most unique medical stories I have read or heard......

How old are you by the way? What did your doctor say about the lesions? In any event, thanks for sharing your story and glad your ok...

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MM, are you doing chelation for your metals poisioning? If so, what method are you using? My husband's Mercury Level is elevated and he would like to begin either oral or IV chelation ASAP.
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Thanks for sharing your story. I'm sorry you are going through this. Your experiences with lazy and arrogant doctors is my biggest fear besides what might be ailing me. I work in a hospital and have not heard one good word about any of the neurologists on staff, which is why I'm looking outisde my area. I not only need a comptetent doctor, but a personable one as well. Those are not easy to find. :(
I'm glad to hear you found the reason for your problems, and like OTR and am interested to hear what is going on with your employer.
Thank you so much for your insight.
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My neurologist is very arrogant, but he is somewhat personable I must say.  Wasn't so much the first time I visited him, but I guess I grew on the guy.  I've realized one thing, a very important thing, and a very sad thing at the same time and it's this: if your doctors like and respect you, you get way better treatment than if they don't.  I've seen it too many times not to believe it.  You would think that all patients would be treated similarly but that's far from the case.  My neurologist didn't think I needed an MRI, but ordered one anyway, because I pressed for it.  Gotta be assertive and proactive, but respectful without being obsequious.  If they like you though, it goes a long way toward better care.  Women unfortunately have it worse in the healthcare system, especially when they see male doctors.  I think women doctors are generally nicer, more comprehensive, and more patient than their male counterparts.  So try to make an appointment with a female neurologist.  That may help.
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Hi Again!

I was diagnosed by Marvin Schuster at Johns Hopkins.  I have alot of digestive symptoms, so my GI specialist sent me there.  He has since retired, unfortunately, and the others who are there are just not as knowledgeable as him.  There are neurologists as well who specialize in this.  Right now I see a cardiologist locally who happens to have a special interest in dysautonomia. It is difficult to get a diagnosis.  Coincidentally, tonight I came across info on autonomic seizures which sound exactly like my more severe episodes.  I have to wonder whether that is a possibility as well.  My illness was triggered by a severe virus 10 years ago, and I have periods of relatively better health and periods of severe decline, especially in relation to my menstrual cycle.  I also have low thyroid, and keeping my thyroid levels stable has been helpful overall.  I have tried endlessly to find a pattern, but I have come to the conclusion that there is none.  Things that make it worse for me are: sugar, eating a large amount at one time, standing in one place too long, and heat.  As you can imagine, after 10 years, my story is long and involved.  Feel free to e-mail me if you want to talk more...***@****

Lauren
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I tend to agree with everyone here on the Neurologist issues. The issues of "respect" comes to my mind. Our issues with Neurology are due to a brain injury. Epilepsy was the end result. He has no patience for a brain injured person who tends to get angry & blurts things out (typical for TBI) I am responsible for 100% of my adult daughters medical bills- I feel I am being ripped off when I pay $150.00 for 3 minutes of this mans time & all he ever does is increase her meds to an untolerable level. He never listens to her concerns or problems. You can tell that he dislikes her. He gives her nasty looks & litterally has told her that she isn't being smart (duh!! She is brain injured!)

we are on Neurologist #4 in 4 years- & it always comes down to the same thing. I have tried to find a new Neurologist-- they all have 4 month waiting periods- Most wan't take a patient with no medical insurance. If you find one that specializes in Epilepsy- they don't understand the TBI- If they are a brain injury doctor-- they don't seem to handle the epilepsy well.

So my question isn't really medically related- but more for you patients--- HOW DO YOU GET THE RESPECT THAT YOU DESERVE FROM YOUR NEUROLOGIST???

My second question is-- HOW do you ever get a question posted on here for the doctor to answer? I have tried for over a month--all different times. I have even got up in the middle of the night. I have tried when others questions were appearing-yet it wouldn't take mine.

I would like her last EEG interprated- as this doctor didn't bother to. He said it was "fine"-- but I paid for a copy of the report from the hospital that did the test- it said it was abnormal. I called & asked for the doctor to explain- he said to make an appointment (another $150) when at her regular appointment-(1 month later) I was told he was too busy- that this has to be done right after the testing was done.
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Good questions.  What were the surrounding circumstances related to your daughter's brain injury? How did it happen (car accident, recreational, etc.)? How old is she? Were there physical manifestations on the CT or MRI of brain injury? And finally, did she have epilepsy prior to the injury or did it develop as direct result of the injury?

As for your other questions, you have to go into an appointment and be assertive with your doctor.  Be well-informed, ask specific questions, and focus on the things that can be treated.  Always prepare a one-page memorandum and make sure he reads it, because it saves a lot of explaining.  Try to be as precise as possible.

As for getting a question posted, it takes some time and patience.  Keep at it, and you'll eventually get through.
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Just looking for a little insight from anyone who may be experiencing symptoms similar to myself.  Getting a question posted is impossible.  I developed tremors in my left leg couple of years ago... and within the last three months developed tremors in left arm.  Been to neuro twice, first time was before arm tremors started.  Thought the leg tremor was some benign tremor.  Went back once the arm tremors began.  Had brain scan and neck MRI - all normal.  He told me it probably wasn't Parkinsons and started me on Paxil for anxiety.  I've been all over the web trying to learn about causes of tremors (which seem more prevalent when at rest) and it seems to point to PD.  What other causes of tremors are there??  What can be done?
Thanks
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With the comments about neurologists, I thought I should share this.  I was refered to a neurosurgeon when an arachnoid cyst the size of a golf ball was found on a recent MRI.  At first, he said, I see a couple hundred cases like this a year, but most patients could not explain their symptoms so no treatment was initiated.  Because I was able to give specific examples of my symptoms including changes in vision, hearing, the frequency of headaches, ect, he took my case more seriously.  In the past 6 months I have had two brain surgeries and hospitilized an additional time during recovery for possible siezures.  In the end, my doctor said I was giving him an ulcer!
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Mira6464

You say you work in a hospital.  
Is any body else sick or have problems?
How old is building?  Was it used for any thing else before it become a hospital?
Has there been any repairs or renovations?
Was area you work in used for any thing else before?

I know of case in New Waterford Nova Scotia where hospital workers have been very sick with all kinds of health problems. About 20% of staff nurses doctors support staff all sick.  Other doctors tell them that they have diseases like MS but they all test positive for heavy metals arsenic mercury cadmium lead nickel barium and many others.  

The hospital did not monitor air before during after renovations.  The hospital did not put up any forms of protection and or filtering and did not give staff any personal protection and had the staff keep working in the areas during the work.  The staff all inhaled the dust caused by the work.  Metal poisoning occurs by inhalation of dust smoke fumes vapours, ingestion and absorption.  

The hospital did not get permits for the work and denies any responsibility.  It also wonders if they even have metal toxicity and claims that the problems may because of lifestyle.

A lot of old lab equipment use mercury for controls.  These leak and no one cleans up the mercury and it slowly evaporates and is inhaled.  Mercury evaporates at room temperature

I find the report on internet  website below
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/1079106456952_14/?hub=WFive
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Yes 3 strokes since summer of 2002.  The doctors termed them small or mild but they still did damage.  I now have problems speaking, stutter and slurred speech.  I lost many words and have problems spelling writing reading.  Spell check does not fix everything so I hope you can figure things out.  Then there are the numb spots, tingles and feeling of bugs crawling.  The doctors only figure out the strokes afterwards at time they told me I was too young and sent me home.

My former employer lied to me about what I was working with.  They told me the material was totally clean and harmless, nothing to worry about.  They told me I did not need any protection.  I learn last year that they know everything that was in material before I work with it and lied too me.  They also failed too report the toxic materials to the government as the law demands.

After my doctor state that my health problems were work related the company terminate my job claiming lack of work.  Then they hire someone else.  They refuse to provide any information on what I was exposed too and the levels.  They have to report this by law.  They claim that it is client confidential and they not able to provide the information.  So the doctors could not treat me because they did not know everything I was exposed to.  Basically my former employer left me to die.  The doctors and my family did not think I would survive summer 2002 and I was under 24 hour watch.  I did not think I would survive.

The WCB the Workers Compensation Board  

This is a bad name.  They should be honest with the name.  It should be something like the EPA The employer protection agency.  The purpose of the WCB it entire existence is for the protection of the employers.  I have spoken with many staff at the WCB rite up to directors and they all tell me that the purpose of the WCB is to protect the employers at all costs and prevent them from being sued.  This is their true mandate.  

Further, WCB staff state that the board does not have a good record for compensating workers for their injuries and so I should sue, as that is the only way I will get a fair settlement.  The WCB tells me I can sue or file a claim.  The WCB states that if the employer pays WCB premiums the workers give up all rites to sue under WCB policy and can only file a claim.  The WCB legal department says I can sue.  I want too sue.

Where you live depends what WCB provides, percentage of gross pay or percentage of net pay with a maximum value, or percentage of average wage in the area.  In any case if you make more then limit all that is over it is not covered.  So you make $50000 a year and average is $25000 and rate is 90% average then you end up with 90% of $25000 or $22500.  Unfortunately, most workers not find this out until they have been injured.  In some cases, when a worker is killed then the survivor gets lower percentage then if the worker was injured.  The WCB does this so the survivor has to return to the workforce.  The purpose of all this is to lessen financial burden on the employer responsible for injuring or killing the worker.

The WCB may provide money for pain/suffering loss quality of life but it not much.  In many cases it works out that they offer what looks like lot of money but then it is not.  The amount gets reduced by age the older the worker the less money.  Then the WCB uses disability percentage determined by WCB doctors to reduce award more.  If you are 30 the max award maybe $60000 seems like a lot but then board doctor says you only have 25% disability.  You get $15000 a one time amount to make up for the pain/suffering loss of quality of life for the rest of your life.

I have been declared permanently disabled and not able to work ever again.  Even with the reports on file the WCB says this is not the case and talk about retraining me.

My former employer denies everything and put out false report which the investigators have taken to be true.  They operate on the assumptions that the employer is innocent until proven guilty and that the employers always tells the truth.  I have evidence that the report issued by my former employer is false but the investigators refused to look at it.
They state that there is no evidence because they found no evidence.

The doctors think the lesions are the cause of the seizures that I suffer now.
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Avatar_n_tn
No chelating for any thing.  I guess the doctors did not want too proceed with out information about exposures and levels.  My former employer refused to provide this information claiming it was client confidential.  One doctor told me that it was too late for treatment and I should not worry about it I should worry about cancer instead.  Arsenic and cobalt cause cancer.  Also I would have to spend at least 6 months in hospital on dialysis and that would damage muscles and damage-destroy my kidneys.

What is important in chelating is that the proper chelaters are used to bind with the metals.  So if your husband is too go make certain that the doctors know what they are doing.  Make sure they have proper training and have been licensed.
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I have to agree that female doctors have been better then the male doctors I have been too.  I have 2 female family doctors and they fight to get me treatment that I need and ready to go to court for me.  What ever it takes.  It seems that the most help and the truth about my condition has come from the female doctors I have seen.  I have one male specialist and he is not bad.

You has to stand up for yourself and take matters into your own hands and keep at it because in many cases doctors work by numbers how many patients can I get thru in a day and how money can I make.  

I have copy of my medical file.  I take it with me when I go see a doctor.  I take copies of information about all metals that I was exposed too.  I find this way that doctors take things more serious because they know I have information.  If they ask questions or claim something different I give them the information.  I ask questions and expect answers.  I take notes.  I take someone with me as witness.  

Whenever I go see a new doctor I ask for copy of report to be sent to me.  Some doctors agree with no problem, others offer it before I ask and some refuse.  If they refuse I say that is ok I get the report from my doctor.  If there are any mistakes I correct them and fax correct info to the doctor that wrote report and drop off copy to my family doctors.  

Some doctors get very upset by this, as they not like to be questioned or to be shown to make mistakes.  I have doctors refuse too see me because of this.  That is fine and I tell them this and remind them that they playing with my life and the mistakes they make and refuse to correct could kill someone.  I also ask how they would feel if they saw a doctor that treated them the way they treated me.  I ask one doctor arrogant doctor what is difference between god and some doctors.  He had no idea so I tell him god does not think he is a doctor.

If you have serious problems with a doctor you can always report them too the medical associtaion.
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Avatar_n_tn
MM,
What an interesting story. We had major renovations done last year. The building I work in (surgery center) was built in 1993 and only used for it's original purpose.
I don't know of anyone else having symptoms as I haven't talked about mine to them very much, but no one has been sick these types of symtoms (symptoms) as far as I know.
Isn't it amazing that hospitals are often the worst when it comes to health as far as employees? I see it every day at mine. Administration cares nothing for stress levels, family life or workplace quality. It's all about the all mighty dollar to them. And then they wonder why there is a shortage of healthcare workers.
Thanks again. And when I go to the doctor I will keep this in mind for sure.

rzc...How rude was that for him to say that!! I have worked with doctors for many years and got used to them treating employees like dirt, but it seems to have gotten worse with patients now. Sad thing is, they know we need them. I am always amazed when I meet or hear about a doctor that the employees really like.
How are you doing now rzc?
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Has your daughter been tested at evaluation center for the brain injury?

I went for what they call neuropsych testing that identifies all areas of problems that result from brain injury, reading writing spelling math memory and on and on. It was very detailed and very long but provided lots of information about acquired brain injuries that I have.

I see that the report shows EKG was abnormal and the doctor told you it was fine.  I would send him a letter indicating that you have the report and what it states.  Ask why he told you the EKG was fine when it was not.  I would also tell this doctor that he needs to take more responsibility with other people
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yes I think the doctors hospitals many employers only care about how much money they can get.

doctors are only human I think many of them forget that and need to be remind of it

I have some doctors refuse to see me or tell me that they not need too see me again.  I tell them that is fine because I do not care have my time wasted.  I also tell them not too worry I will report them for their conduct.  It iis amazing how quick the attitude is lost and how quick they try too make up for things.  I guess it is just matter of stand your ground.
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Avatar_n_tn
I can tell you for a fact, and an indisputable one at that, that you can definitely appeal the decision of the Workers Compensation Board in a court of law.  Courts of law will give great deference to the determination of the agency/board, so the burden of proof on your side is significantly higher than just "more likely than not" which is the standard courts use in civil (but not criminal) cases.  Remember, Workers Compensation Boards are pseudo-courts (courts which carry out quasi-judicial functons) and EVERY person has a right to appeal a final decision to a JUDICIAL court of law (courts created under Artcile III of the U.S. Constitution).  

If you can prove, via substantiated medical testimony from one or (preferably) more TREATING neurologists (hopefully with excellent credentials), you can get the decision of the WCB overturned in my estimation.  Just make sure that your medical evidence is so consistent and unimpeachable so much so that it's not even open to attack.  If you want really want to seal the deal, what I would recommend is that you go see the Department Chair of Neurology at an excellent and well respected academic health center and see if he confirms the diagnosis and prognosis that you are unable to work (anyone who has suffered 3 strokes, in my belief, is presumptively unable to work and shouldn't be expected to either).  In any event, if you have 3 (and you already have 2, if I read correctly) opinions from treating neurologists, you WILL win in a court of law, and the judge will, sua sponte (on his own initiative) overturn the decision of the Administrative Law Judge.  

Did you file for SSDI with the Social Security Administration? How old are you by the way? And also, depending on the state you're in, you probably have grounds to sue your employer for intentional infliction of emotional distress, for punitive damages, for dangerous work environment created by negligence and a HOST of other torts.  I think you have a great appeal from the WCB final decision (you can only appeal a final decision in a court of law, there is no "interlocutory" appeals in these proceedings) and an even better case against this shady, unconscionable, egregiously malevolent employer.  By the way, your case against your employer will be taken up by a personal injury attorney who will only collect IF you collect, so you have nothing to lose.  Just make sure the statute of limitations has not expired, and if it has, maybe you can get it "tolled" (extended).

Also, what state are you in?

You have gone through a tremendous amount and I have the utmost respect for your courage and your resolve my friend.
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This must be the place for me, since most of what I've read is familiar.  I don't know if I'm grateful or sad to see that so many are going through the same thing I go through trying to get to the bottom of what is going on with my body.

I've always been "well".  In fact, I suspect that my friends and family have viewed me as being nearly indomitable.  Wrong!  In the mid 1990's everything started going wrong with my family.  Our oldest son was diagnosed with Lou Gehrig's Disease about the same time my husband had a minor heart attack, and while hospitalized they found lung cancer from asbestos exposure when he was jut 18.  After that he had back surgery, and in the meantime I had a hysterectomy because of extremely high CA 125 values in lab tests.  Usually that's an indicator of possible ovarian cancer.  Later, I found out that it also can be an indicator of Autoimmune Hepatitis, a "rare" liver disease.  So, I had an unnecessary hysterectomy and while they were at it, a repair of a mild bladder prolapse - which they botched so 9 months later they had to repeat the surgery.  More on that later.  But, it turned out that I didn't have a bladder prolapse at all.  I had a "vault" prolapse, which is much more serious. Anyhow, 1995 and 1996 were severe crisis years, to say the least.

Since our lives were clearly falling apart, we decided we had to move somewhere we might be better able to afford to live on whatever disability pay we could manage to get.  My husband is an engineer and of course, he was laid off because of "no work".  Ha. And his repeated hospitalizations had nothing to do with the lay off?  But, we were too beaten down by then to fight it.

So, we moved to Las Vegas.  We made the move with the help of my 19 year old nephew who we raised after my brother died, and our 21 year old grandson.  My husband was just out of the hospital from back surgery so most of the burdon of the move fell on me.  I wasn't even slightly hesitant to take on the job.

Shortly after our arrival in LV my husband found a job and went back to work.  I was tired all of the time by then and had a bizarre insomnia that kept me up all night, yet I would fall asleep at odd times, wherever I happened to be sitting, no matter what I was doing.  I've always been slim, but my stomach began to swell and so did my ankles.  I didn't really feel sick, but I saw a doctor who ordered some diagnostic tests.  The technician who did one of the ultrasounds told me to go home and call my doc immediately. He was a new doctor to me, and I wasn't able to reach him. Though the tech was clearly alarmed at something, the doctor never called.  After several weeks, while the swelling increased, I found a doctor through an ad in the paper for the opening of her new clinic.

I saw her only once and she ordered a fax copy of my ultrasound.  I left her office, walked into my house and the phone was ringing.  It was the doctor's office telling me to go immediately to the hospital and expect to be there for a "few" days.

Later she told me that she was certain I had pancreatic cancer.  There was a complete blockage of my bile ducts and gall bladder.  She did a liver biopsy as well as another test of the pancreas (actually, she called in a specialist to do the tests).

When I was finally back in my room, feeling good and goofy from the meds they'd given me, a succession of doctors started coming to see me.  The GI doc, who I'd never seen before, announced that I had PBC (Primary Biliary Cirrhosis) and would die in 2 to 5 years.  Just like that.  And I felt fine.

I had to wait for a specialist from Stanford who sees serious GI patients in Las Vegas once a month.  No meds, no treatment, just bed rest while I waited.  Finally, I was told that I actually had Autoimmune Hepatitis.  Like it sounds, my body was rejecting my liver because it did not "see" it as belonging to me.  I had stage IV cirrhosis and end stage liver disease, though I'd only been a very light social drinker and never  used drugs of any kind.  AIH is primarily a disease of very young women yet I was almost 60, so I didn't fit any profiles.  I was referred by my insurance company to Scripps in La Jolla for transplant evaluation and it was assumed I would go on the liver transplant waiting list.

But, it wasn't meant to be.  I started taking immunosuppressive drugs, Imuran and Prednisone, and gradually went into remission so despite my severely damaged liver, I no longer needed a transplant.

This is where the neurological symptoms come in.

I began to have severe muscle spasms in my back and the backs of my legs.  My feet felt like throbbing lumps.  The pain was constant.  Over the years I'd had symptoms I'd always ignored, but no longer.  Things like my lower lip swelling for no apparent reason.  In fact, today, six years later, my lower lip is going through one of it's swelling routines.  It's something that just happens to me and no one can explain why.  I have tremors in my hands but not all of the time, and I have many symptoms of Parkinsons but apparently I don't have Parkenson's.  I've been tested for everything.  Lupus, MS, conditions no one has ever heard of, and I don't have any of them.  No lesions on my brain.  Yet I sometimes will be sitting, start to doze and jerk violently  upright.  Scary.  My gait is wobbly sometimes and okay other times.  Sometimes I'm severely stooped and other times not at all.  I NEVER sleep for a full night.  Instead, I tend to fall asleep if I sit down and relax, which means that I often fall asleep while eating dinner, for example.  My husband has given up on trying to get me to go to bed, but instead just takes my fork out of my hand and moves my plate away from me and lets me do my thing. I will wake up at 2:30 AM or 4:00 AM and industriously begin to clean house or bake bread or pastries or whatever I feel inspired to do.  I love to read but that can't happen because that means I relax ergo I fall asleep.  I don't seem to have any cognizance problems and in fact, my mind is almost buzzing and my memory is as good as it ever has been or even better, though I forget specific names for people and things.  Yet I could dismantle and reassemble the computer or for that matter write a thesis if I had to.  

The constant pain is the biggest problem.  I can't take anything with Tylenol in it because of my liver disease so I'm using a Duragesic patch when I remember to put a new one on, and I have morphine for breakthrough pain, but I rarely take that either.  I know it's dumb to complain about constant pain yet forget to take pain meds, but that's the way it is.  But the pain is debilitating and causes severe fatigue when it's at it's worst.  Today it's bad, so I sit here - and my ankles are swollen.  If I try to walk I'll wobble and probably stagger from wall to wall as I walk down the hall.  I have some numbness in my feet, especially toes of my right foot, and some numbness in both hands that feel swollen but they aren't.  I'm told that I have severe spinal stenosis and maybe some herniated disks but I'm not seeing anyone for that nor am I seeing a neurologist.  We moved back to Oregon where we were born last December when our son, who owned the house we were living in, sold the house.  My huband has had another back surgery and another cancer surgery since 1996, and two possible strokes.  We are near destitute because we can't find work and I suspect we have physically aged dramatically because of our medical problems.  

What is going on?  These neurological symptoms came out of nowhere, about the time I was diagnosed with the liver disease so everyone assumes it's autoimmune, but could it all be caused by the Prednisone and Imuran instead?  Incidentally, our son died from his ALS the same day I was diagnosed in late 1997.  We believe that he committed suicide with the help of compassionate friends.  This is very common for people with ALS.  He coerced a younger brother to take him to Mazatlan where he had friends who he said would care for him.  He was near helpless by then.  He died a week later though his ALS wasn't yet that serious.  Life hasn't been very kind to us, but others have it worse. I know that.  I'd just like to know what might be going on with me now.  Parkinsons?  MS?  Lupus?  None of that?  Any ideas from anyone are welcome.

Take care,
Geri

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Dear Geri, I don't know what to say.  I read your post and  I want to reply but I really am taken aback.........  Could your family have been exposed to significant toxins?  Have you ever tried to go through detoxification?  That's the best I can do for now.  It seems to me that your body is heavy laden with toxins and you liver can no longer keep up.  There are very safe methods to help your liver and lighten its load.  You can look up detoxification on google.  Check out chelation also.  How do you eat?  Do you eat lots of good raw vegetables? There could be lots of action that you could take to possibly help your body to heal.  I believe in God and I believe in prayer and I will be speaking to God about you.  I pray right now that He helps you.  He knows what is wrong and how to fix it and He can make sure it gets done.  May He help you to sleep a peaceful sleep that comes only from Him so that your faith can be strengthend as well as your health.  God bless, Geri
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No toxin exposure to my knowledge.  Although our son was going to UW and working as a cook on a commercial fishing boat when he had his first ALS symptoms.  He told me that the drinking water was in a hold that had previously held fuel then was cleaned out and filled with water.  He wondered if a chemical residue remained and that might have caused his ALS.  But, could ALS be triggered so quickly after exposure?  He was sent home from the ship when the ALS symtoms (symptoms) first appeared.

I can't imagine when I might have been exposed to toxins.  Life has been pretty "ordinary" for me.  I no doubt had liver disease for as long as 20 years before I was diagnosed and the joint pain and other possibly neurologic symptoms started  up almost immediately when I first got sick from AIH (Autoimmune Hepatitis).  We've lied a pretty ordinary life, mostly in Washington, California and Oregon except for a few years in Switzerland.  But as I said, the autoimmmunity is always there, but something  had to trigger it.  I'll probably never know what that was.  

The numbness in my lower lip is slightly worse today.  I wonder if I'll ever get any answers?  But neurological problems can b4e especially hard to diagnose, I've been told.  How can they treat something that they can't identify?
Thanks again,
Geri

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I only red the last comment you posted.  I must say that is is very stupid of them too put drinking water in a fuel hold.  

gasoline and diesel fuel contain many toxins.  symptoms can show up fast or slow depending on how much exposure and how fast and the person exposed.

a small amount of arsenic .2 to .7 grams cuould kill you if you get it all at once.  but if if you get smaller amounts over a period a time it builds up slowly and you can tolerate higher levels.  it can still kill you or leave you with a great many problems.

many hereditary diseases like MS and Parkinsons are not thought too be the result of toxic exposure and not family based.  In the past families all lived together or very close and all have the same exposure.  but they find many men in the navy have parkinsons.  they look at arsenic been the cause of this - arsenic in the paint, arsenic in the diesel fuel and arsenic in the artilary shells.

may be look on the internet and try too find new research about the problem.  I will take a look as I has access too a number of medical sites

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Thanks for the information.  Workers comp told me that I could appeal but that my appeal would be to them.  Of course they fail too tell you about what all you are entitled too.

I want too sue my former employer and I told workers comp that I would sue them if they try prevent it.  The person that handles my case was surprised to learn that I had talk to the legal department and was informed that I could sue the employer.  So she is not very happy but that is too bad.

I am 35... Yes 35; had too check that.  I went from perfectly healthy with no problems age 33 too being in death's house not just on his doorstep.  Some how I escaped, for how long I have no idea, I had what doctors figure was a double heart seizure a couple months ago.  

I have lots of medical information from specialists that indicates all my problems are the result of the heavy metals.  I have even more information from current research that backs up the doctors reports.  Even so the doctors have not figured out everything that is going wrong.  At least now we know the why is heavy metal poisoning.

I got a copy of the investigators report showing all the violations that had been found.
It also contained the levels reported by the company.  Based on these the levels were said to be absurd for arsenic and excessive for cobalt.  Still no charges were laid.

I got a copy of the report submitted to the federal government by the employer and it has levels 2 to 3 times higher then reported to the investigators.  I also have documents from my former manager that reports levels 20 times higher then what was reported to the investigators.  This information was also kept from the federal government.

I have documents from one of the owners which he expected me to sign.  He expected me to give up all my rights under every law set to protect workers in order to get 3 weeks pay for lack of notice when he terminated my position.  I did not sign it.  My group manager offered me medical leave in front of witness but the company later denied this and refused to provide any benefits.

I have documents that show the company refused to provide the information on exposures to myself and my specialists even when they are required too by law.

I have proof that they failed to inform me about what I was working with and failed to provide me with proper protection.  They knowingly and willing exposed me to highly toxic and radioactive material without proper protection in order to save money and better their bottom line.  Basically it comes down to being murder for profit.

Sounds like something impossible but I have learned that it happens all the time and the governments around the world are now making part of their criminal codes for what they term corporate killing.  This is the willful disregard for the health and safety of workers or the public causing injury or death in order to benefit the corporation.

time for me too go.  I get tired fast any more



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have you been a accident at any point and had neck injury or whiplash

does the numbeness tingles get worse if you put your chin too your chest
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It looks like I messed up the numbers I gave you concerning arsenic.

It is .07 to .2 grams (70 to 200 milligrams) of arsenic as a single dose that is lethal.  this depends on bodyweight and also the person ability too withstand the poisoning

in any event even small amounts of arsenic or other toxins will result in various health problems immediately or later on.  

Only recently have they found that many toxins pass the brain-blood barrier and get deposited in the brain causing damage.  Before doctors thought the brain remained unaffected.

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What type of brain scan did you have CT or MRI.  CT scan of the brain even with x-ray dye may not show anything just because of the limits of the machine.  Have you had EMG testing too find out if your nerves are conducting signals too the correct places at proper speed?  

I understand that there are a number of causes for tremors.  It could be Parkinson
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Have you been tested for toxic exposure?  Has your husband?  

Toxins in the body are removed by the liver and kidneys.  Therefore they suffer a lot of the damage.  In the event of exposure or poisoning you may suffer what feels like severe back pain or spasms.  The doctors told me this is really caused by the kidneys taken a beating from the toxins.  This may persist for along time because the toxins are deposited in the organs, bones and brain and can remain there for many months too many years.

The actions of your husband
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I must share with you that these symptoms are very similar to 'gulf war syndrome' symptoms which is identical to the 1988 CFS definition.  Do an internet search on the American Legion's short list of the gulf war syndrome symptoms and you will see what I mean.

I recognized these symptoms which have been affecting the general population when I had studied the effects of 2-butoxyethanol (ethylene glycol monobutyl ether) that was used during the 1989 Exxon Valdez oil spill cleanup in both Inipol EAP 22 and Corexit (38% concentration)

... so not a myriad of choices here.  I RECOGNIZED THE SYMPTOMS!

Do a search and see how many products you could be using every day with this poison/pesticide/solvent in it.  It causes damage to the central nervous system, to the entire endocrine system, to joints, to the kidneys and liver BIG TIME, and to the immune system.  It gets away with this, because there are so many secondary symptoms that the primary cause of harm goes unnoticed.

By the way, second hand solvent exposure happens frequently - usually from the breath of one exposed getting into the eye membranes and breath of another.  It doesn't even have to be in an intimate situation.
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PS

I forgot to mention the first cause of harm:  to the red blood cells.  It is the first noticeable effect of this chemical:  fatigue.  It is a hemolysis that doesn't show up in the regular tests, but with a retic ratio (mature to immature red blood cell ratio) you will notice an abnormal reading from 2.5 days after exposure.  This compensated hemolytic anemia starts up right away and underlies all other symptoms.  It is the cause of your fatigue.  (Also check CBC with differential, these counts should be abnormal as well.  What are the size and shape of the red blood cells?

The reason this chemical's harm is so hard to diagnose is that it affects so many systems in one's body and sometimes the results of one ailment counter the test results on others.  AND doctors don't expect one chemical overexposure to affect so much.  They will need to keep in mind that a bone marrow transplant may be necessary for those severely exposed and that paralysis is also possible.  Painters are a high risk group for the harm of 2-butoxyethanol and so are those who clean; mechanics, builders, etc. as well as those in the plastics and dry cleaning and oil cleanup business.

There are some food supplements that can help; but taking medications is most likely counterproductive for those who now need to avoid all types of chemical exposures.  Most certainly educate yourself and do not exposure yourself to this chemical family at all.  Goggles and chemical protective gloves are important when using products containing this chemical AND learning the signs the body gives for overexposure to chemicals, such as headaches, sore throat without fever, coughing a lot, etc.  Check on the internet for solvent studies for more info
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