Seeing Doctor again today; maybe some progress in my case

Had the blood tests and ECG done, and went back to the doctor for the results.
The doctor has finally decided to take some action and wants me to have a CT scan done in Brandon, MB. There is no neurologist involved yet in my case.
Am trying to set up an appointment, but have no transportation yet; most of my funds are depleted over the last 1 1/2 years, because I’ve lost the majority of my music students (likely due to this illness), so now I’m in financial straits.

At my last 2 doctor’s visits in the past 2 weeks, my feet were shuffling only 6inches at a step, but the doctor gave me no advice or treatment for the swelling in my legs. Couldn’t get a knee-jerk reaction most of the time he was tapping; no reaction to foot-tests, even though I could feel, my feet just didn’t move. Vision problems the same, muscle cramps, nerve spasms, dented fingernails, nosebleeds.

Last month, the Flu Clinic co-ordinator took notes over the phone regarding my reaction to the flu shot in 2007.
I don’t expect much from the health-care profession here; so far, they’ve only watched me become more and more crippled to the point where I’ve been losing everything I’ve got.

During the doctor’s visit, I didn’t mince words; didn’t tell him off, but repeatedly told him that it’s been over 1 1/2 yrs; I’ve been to see him about it 4 times, and yet nothing has been done. He didn’t say anything, but took notes again, and only asked me if I had any plans to kill myself.

I have weakened again…back to the medical walker again, and the pain in my muscles is so bad I can’t sleep nights. On the plus side, my lungs feel better, because I’m staying indoors as much as possible while the town keeps spraying trees and lawns and boulevards with pesticides and herbicides. I’m watching my diet, so my heart can recover.
I do believe these neurotoxins gave me this relapse; it keeps happening every time the town sprays, or when the farmer’s fields around town are sprayed. Same reactions, and set-backs.

I could feel your prayers; thank-you, and please keep praying.
Will check back again.
–Donna

Just another update…I’m scheduled for a CT scan next week, then back to the doctor for another appointment. I have also found transportation to the appointment!!!

All of this comes right in the middle of the most busy and stressful time of my work-term. My students are having exams and I’m preparing/teaching the last lessons; I’ve got tons of paperwork to complete for awards and reports, meetings with parents, etc. If I don’t make a good final impression on them now, this will jeopardize lesson enrollment in September, and that’s my livelihood and income. There’s the extra yard and garden work to get done, cooking and errands to do up ahead of time.

Just trying to figure out how to do all of this, and feeling overwhelmed.:confused:

I’ve had a CT scan before–years ago, for migraines; it was a real brain-scrambler, left me feeling confused and forgetful for days afterwards.
I’m worried about that happening, because it’s hard enough to cope with my situation as it is, but if parents/students see me deteriorating, it will be very hard for me to survive in my occupation.

Thank-you for your prayers! Actually, I’m too dizzy and exhausted most of the time to worry much; I used to be a real worrier, now I just can’t seem to concentrate long enough. Instead I seem to need to sleep a lot more these days. Vision still swirly; lots of round, white lights in both sides of peripheral vision. Headaches are back, but not as bad as the first year, eh people?

On the plus side, you should just see my purple iris blooming! They’re so beautiful! And my chives are ready to bloom, and a few of my perennials are starting to bloom too. It was a hard struggle, but I actually put in a little garden again this year. I’m so glad I did, because I love green, growing things so much. Hope everyone is finding some enjoyment in the wonder and beauty of spring, and that God will bless and keep us all as we deal with these illnesses and our problems. Later, friends…..

No, actually I’m on my own, and finances are getting tighter and tighter.
Have lots of lower back pain today, weakness, dizziness. Have CT scan this week. Fortunate to be able to hire someone to drive me there and back, since I don’t have a vehicle anymore. Tried to get as much done-up as possible for this week, so it’s easier to cope with it, but I just get so weary nowadays, can only do so much, then too tired to think or do any more.

Hope to see some progress in my case, but so far it’s been an uphill battle trying to get medical attention.
Thank-you for keeping me in your prayers.

The CT scan was done within several minutes on Monday night.
I went back to my doctor again today, as I was told to do. And basically, I find that he is definitely taking the position of denying the symptoms I describe to him, stating that he doesn’t see the evidence.
Also today he told me to see a psychiatrist at this point.
The gist of it went like this: “Now Donna, I’m not saying you’re nuts, but psychological problems would make you feel you have these symptoms. I then asked him if he was saying that I’m imagining all of these things for the past 20 months. And he just talked around in circles, and came back to the point that I must be having psychological problems. Then I said that there was no doubt that I have been feeling emotionally troubled and upset in the 20 months of suffering I’ve had, especially since I’ve gone everywhere several times and have received no acknowledgement or help.”

It was difficult, but I kept my cool. They are obviously covering up for their medical mistakes, and it would be really easy to push it all under the rug at this point, and say I’ve got psychological problems.

I reiterated the symptoms I’ve had since that flu shot, reminded him that I rode my bike for nearly 10 years in this town, and to that flu shot, and that the symptoms started immediately afterward. And that I’ve been crippled since. I can see that he cares nothing for what I’ve suffered in these 20 months. I’m shocked and hurt that he’s taking an adversarial approach to dealing with me.

He did state that he will be ordering an MRI and a visit to the neurologist for me, but was completely agitated during the interview, and wanted to end it several times. He doesn’t care that right now my vision is flickering from dark to light, that my legs are swollent to twice the size they should be, that I have no reflexes in my knees, that I am staggering and shuffling at every step and use a cane and a medical walker in order to walk, or that my lower spine is in constant pain. He didn’t appear to listen, and offered no medical treatment for my immediate problems. My hair is long, and I showed him the line of where my natural hair colour turned grayish at the time of the first onset of this terrible illness. I showed him my fingernails, which are ridged and dented with indentations which never existed before all of this. He just seemed to get more haughty, and only made more and more efforts to exercise control over me. (I’ve dealt with him for 11 years now, and his manner with his patients is often the talk of the town. But we have no choices here; he’s the head doctor, and the other doctor isn’t accepting new patients.)

However, I just cooly and calmly kept stating my symptoms to him, and the position I’ve been left in. I also stated that “science did this to me, and science is not going to be able to fix me, because it’s too late now”.

One more thing: in my part of Canada, the dumping ground for the patients that the doctors don’t want to deal with for one reason or another, (sometimes medical mistakes) is always the psychiatric course. But I refuse to be termed “a nut case”; I will state the truth and stand by it.
As well, in the new rules of our system, social assistance is only available to people who have been termed psychiatrically unfit for work. All others are expected to fulfill their job interview/work quota in order to qualify for municipal assistance. I am vulnerable and powerless due to my illness, limited resources and social status; and it looks like this is how they have chosen to deal with me.
I would really like to see the medical people acknowledge what has happened to me, but that would involve accountability, and an admission of negligence on their part, so of course they prefer to protect themselves at all costs.

At this point, I have some money in term deposits in my local bank, so I couldn’t possibly qualify for social assistance on any terms anyway. I can use this money for an emergency fund and also to live on for as long as possible if my employment income keeps dropping. I am still teaching music, I just don’t have any more students till September, that is, IF I have students.
I had a bit of good news yesterday; 2 of my students have pre-registered for the fall term, (though that could change; it certainly has often enough before) so I still have [B]hope[/B] of earning a living. There may be people who don’t mind my crippled legs, mistakes, forgetfulness, and diminished skills. If so, that’s wonderful! I’ve worked so hard for this career in the 25 years I’ve been a music teacher, that it would certainly be hard to lose everything.

At this point, I see my doctor for what he really is–heartless, careless and useless; and have committed the entire matter to the Lord, without emotion. I am going to try to overcome this experience somehow, in my soul and spirit, and not let it get to me. God knows what I’ve suffered, and what still lies before me.
But no matter what happens, my doctor will certainly have to stand before God some day, answer to Him for every one of his actions, and be judged.
As we all will, myself included.

A trip to Winnipeg for the MRI will drain some of my finances, but I will go through with it, though I have no hope of my medical condition being dealt with, after dealing with a doctor like this. Most likely, my prospects are nil or poor at this point.

In the meantime, I will proceed with my life as usual, as much as I am able.
I have a tiny container garden in the back of my rented townhouse, and though it is now exhausting and painful to work with it, I still enjoy plants, and they give me some food for my table. Also, I have the capacity to make money last a long time, and have many basic homemaking skills which enable me to cope with my needs. Most of all, I have the Lord, and He will take care of me in this life, and receive me to Himself when the time comes to leave it behind. And He is also the one who comforts us with the Scriptures which state:
“Thou preparest a table before me in the presence of mine enemies;
thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord forever”.
If God is my only portion in this life…He is sufficient.

And though this has all been a horrible experience for me, I do know that I still have many blessings in this life for which to be grateful.
Right now I am bewildered and hurting, but trusting God in the struggle of it all,
Thank-you all for your understanding, support and fellowship; it has helped me so very much!! I don’t know how I could have handled all of this without this group. It would sure be hard to deal with everything otherwise.
Good-bye for now, and God bless you! Will be in touch again,
Donna

Thanks Tina, for your supportive and understanding words.
For the past few days, I’ve been trying to deal with my emotional feelings about all of this. I’ve been feeling very angry and upset for days, and it’s only since yesterday that I’ve been able to begin to rise above my feelings.
As usual, I cope.

This doctor states that he doesn’t see anything wrong with the way I walk now, and there’s “no evidence” to suggest I had a bad reaction to the flu shot, or GBS. Obviously, my using a cane and a walker are “normal” to his way of thinking. I cannot understand his attitude. I think he’s been negligent from the start, then when he finally started documenting my symptoms (I’ve been there 4 times, now 2 more times about it), he probably hoped that in time I would heal myself and that would take care of everything. And now he’s trying to discredit me, and taking an adversarial approach. And to cover up everything, he is willing to push it all under the rug by cloaking the truth within the “psychological” category.

Every time I go to him, I end up feeling very disturbed by his manner and attitude towards me. He’s just so indifferent, and I sense that he’s trying to play mind games and mind tricks when he asks me questions or makes comments.

I wish I could say I have improved since this all began in November 2007.
I have made it through those terrible first months of continuous muscle contractions and nerve spasms. I keep having episodes of recurrence, especially if my muscles get chilled, especially my feet, legs, hands and forearms. I thought I was getting better this spring, because my walking stride had lengthened a bit more, but when the town started the spring herbicide spraying program (trees, park area, boulevards, ditches & yards for dandelions), I got immediately worse again and have had another set-back. Now I can walk only with my walker, and with very short steps. My legs and arms and back are much weaker than a few months ago. I’m having constant trouble swallowing, my vision has large white balls bobbing on the left side of my vision, and has been flickering off and on many times throughout the day.
I’m having trouble concentrating and thinking for more than a few minutes at a time, trouble gripping things with my fingers, dropping things over and over again. Cramping continues in my feet and hands and fingers.

I’ve been thinking that it’s only a matter of time before more and more people get these symptoms. There are so many nervous system disorders now, and demyelinating illnesses. I believe that neurotoxins are at the root of many of them, caused by food poisoning and toxic chemicals in our air, food and water, buildings and environment, and vaccinations. Our bodies can only tolerate a certain amount, and then the effects of the damage gradually shows itself, and the symptoms appear and become more pronounced. I know that I don’t have any more faith in Science or Doctors; their work is a business-for-profit nowadays, not a profession.

From what I’ve read about the flu vaccine in 2007, there are many people who were adversely affected by it. The truth about this should be made public, and if the health care system was honest, instead of secretive and self-protective, it would be dealing with this issue properly. How many people have suffered, been crippled, and even died from this, that haven’t even been acknowledged? Their symptoms have been ignored or misdiagnosed, and they’re living with or have died from the complications? Is the truth coming out on their medical records? Or is this just another cover-up by the health care system?

I certainly never thought my situation would come to this, but it seems the only thing I can do is doctor myself, save and spend money on anything that helps, without any acknowledgement or support from my “Doctor”.
I’m praying that God will deal with him accordingly; I know that I have spoken the truth about what has happened to me, and my doctor has no respect for the truth, or for me.

Thank-you very much for your reply. There are good doctors and bad doctors; I just happen to be dealing with one of the latter ones. This doctor doesn’t usually ask or answer questions; he observes, and makes notes on his computer. He orders blood tests with some categories checked off, but doesn’t tell the patient what they are for. He gets the results, but doesn’t tell the patient what the results are. He doesn’t tell the patient when he decides to change medications; you find out about it when the pharmacist refills the prescription, and it is different than usual.

He likes to hand out pharmaceutical samples of new drugs to his patients, such as Vioxx, which he tried to get me to take while I was having diagnosed heart problems/ high blood pressure 6 years ago. After I read the info on the package, I knew it was dangerous for me to take it, because in large bold print the package stated that the product could cause heart attack and stroke if I had asthma, heart problems, high blood pressure and thyroid disease. I took these sample meds back to the doctor, told him why I wasn’t going to take them, and he just grabbed them and threw them back into his cabinet and said, “I’ll just give them to someone else”. Shortly after that, Vioxx came under fire from our Health Care System, and the media warned the public not to use it because it had been linked to deaths.

In my case, it seems he is willing to see some of the symptoms I have, and instead of attributing it to the GBS symptoms, he is attributing it to “stress”.
For instance, I’ve visited him half-a-dozen times to date, and told him and showed him that I am having problems with stroke symptoms: slurred speech, trouble speaking, reading and writing, drooling, memory loss, concentration, vision, hearing, co-ordination, muscle weakness and contractions, nerve spasms, trouble swallowing, constant pain in my lower spine, trouble walking for past 20 months necessitating using a walker and/or cane, poor reflexes in knees & feet resulting in constant shuffling and staggering, . The only thing he will acknowledge is my [B]stress[/B] regarding these facts, not these facts. And he is only willing to designate the stress as a need for psychological counselling.

He has absolutely avoided any questions or discussion of my symptoms or of GBS till my last 2 appointments; at my last visit, he stated that he sees no evidence to indicate that I have any symptoms of GBS. When I show him how I shuffle and stagger when I walk, he will not comment.

But because I am stressed out about the symptoms ‘I perceive’, he would be willing to recommend a psychiatrist. That basically means that if the psychiatrist would see any evidence of stress/dementia in me, I would probably initially qualify for disability assistance (though I would be disqualified immediately afterwards due to the fact that I have more money in the bank than would qualify me for assistance). It would also completely by-pass any accountablility on the part of the doctor, staff & hospital in regards to their failure and negligence in initially identifying & treating me when these symptoms first presented in late 2007, and I sought help repeatedly from them and was ignored and turned away. It would throw the problem into someone else’s court, and he would no longer have to deal with it.

Because I’ve already contacted the “Flu Co-ordinator” regarding my reaction to the flu shot, there is already a file set up with my complaint. But how do I prove my claims in the system? The doctor has avoided the issue for 20 months; the staff have now “clammed-up” and are hiding behind a cloak of silence. They either stare rudely at me as I shuffle and stagger along, or deliberately look the other way; and that is the extent of the medical treatment I have so far received from them.

Just what is going on with these so-called professionals? I see people being treated for sprained wrists and pulled tendons. They are bandaged and splinted and going back and forth for appointments till they are well.
But I’m forced to undergo the wreck of my body & mind and occupation in the community as a music teacher due to my sudden and prolonged loss in ability and proficiency.
I have had to undergo constant pain and crippling without any help whatsoever.
I have had to purchase my own walking aids at my cost, with no compensation.
They don’t care what they have done to me. I have always been very athletic and usually ridden a bicycle for the 10 years I’ve lived here before this happened to me. Suddenly, and since Nov. 2007, I stagger and shuffle along with small steps, supporting myself with a ski-pole (initially), then a walking cane, then a medical walker one of my students found for me at a yard sale.
And in all this time, the medical profession here has not acknowledged my condition, the reason for it, or given me any practical treatment or help.

I’ve tried and tried to deal with this alone. I’ve tried to be brave, and as strong as I still can be, considering that I have only 1/3 of my former strength. I know my mind is damaged; I know my body is damaged.
And so does everyone else in this town by now, except for my doctor and the silent medical staff.

All of these procedures that are discussed on this forum are foreign to me.
I don’t know the first thing about any of them, and the doctor isn’t going to discuss them with me or take any counsel from me if I ask for preferences. He is not even approachable; and at the end of my last appointment, he coldly stated that we need to decide if I’m to continue with him as my doctor. So you see, that’s the way a patient is handled if the doctor thinks the patient is “being difficult”.

And I’m also afraid of the MRI that he has finally ordered for me, though I’ll have to wait a few months for an appointment. I know I have numerous chemical allergies, and they have been more sudden and severe since these GBS symptoms came on. I get immediate swelling of membranes, especially tongue and throat, trouble breathing, hives and rashes.

Is an MRI the produdure when they inject a person with dye? Because I did have a medical procedure done in the past at a different hospital when they injected me with dye, and I had convulsions a few minutes later. I don’t remember too much more about that. It was done in the late 70’s/early 80’s.
I’m scared that the procedures of the hospital tests will cause me more damage, and then how will I cope? I’ve already lost so much ground, and don’t want to lose the remainder of my abilities for teaching music and caring for myself.
I am now jobless and with no working income, just living off my savings.
Obviously, if they wreck my body and mind any more with their tests, I’ll be worse off than ever; and if that happens, they won’t help me, from what I know and have experienced already.

Maybe I should just be thankful for what I still have left, because at least I have that. The medical profession isn’t really interested in what has happened to me, or in helping me. They’ve ruined my life, and have left me to pick up the pieces, if I can, and cope with it.

From what I’ve read on this forum, we all have similar symptoms. Most people here have had numerous tests and procedures done, while some haven’t. Which of us are better off for all that the medical profession has put us through?
Can you walk? Are your symptoms healing faster than those who haven’t been treated? Can you work and earn a living? Are you worse off after having the procedure done?
My main goal is to survive this, and to cope, and to build up my life again, and to continue to be self-supporting, and I sure don’t want things to get any worse than they already are.

The more I deal with the health care system about this, the more worry and fear I have. I don’t trust them any more, because of the way they’ve treated me to date. Maybe I shouldn’t go back to them; their procedures may leave me more crippled, with kidney failure from allergic reactions to the dye. I feel that I’m in the hands of a bunch of “mad scientists”, who don’t know what they’re doing, and I’ll be the one to take the consequences of their mistakes, while they will just wash their hands, walk away from the situation, write anything they want to in my file to cover it up, and forget all about me.