Worry and Fear

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.