cindys601

Hi all~

I wanted to share with you all my recent appointment because I read of so many people getting the brushed off and how frustrating it is for all of us...

At this point in the game, I have had negative MRI's, a negative lumber puncture and much frustration. At 1st, neuro was looking for MS but since all my tests were negative, he said that we would just have to sit back and see if anything gets worse.

Who wants to wait for things to get worse when its already so bad!! I had previously posted that I looked at my MRI and saw that my cerribelium is sitting very low on my spine. So I researched this myself and decided to make an appointment with my PCP and ask him to take a look at what I thought was abnormal.

I saw him on thursday. The only thing he could offer was that the nero reported that my reflexes were off. Thats it.

I explained that I am not a trained specialist but comparing to a normal MRI, I was concerned. He just totally flipped on me!! Here is a man that I have known more than 1/2 my life, and he wigged out!! I asked him to please just look at the comparison and he told me I have no right, nor does he.

He then began saying that maybe I was making myself worried, thinking "oh My god!! It must be this, it must be that" He then started the "it is probobly stress and anxiety. You'll find out in the end"

I was, by this point, so frustrated. But I stood my ground. I told him, I fear nothing at all. I don't care WHAT it is I have, a dx does not create this anxiety. Being told that whatever it is, is unknown, so lets just call this stress, that is what is creating anxiety.

My doctor has walked with me through my journeys in life, through a horrible abusive marriage and then divorce, and some very horrible and stressful times following this. He watched me struggle with being a single parent to 3 traumatized children who had been through so much and had so many issues because of this. Through all of these stressfull events, we overcame them. I worked my butt off to care and provide for my children. He even came to my home and purchased a bird from me, knowing I raised birds on the side to make extra money for my family.

And so with all that being said, I simply told him, that why now, 13 years later, when things are much calmer, I am happy, in a loving marriage, my children are doing much better, and there is a sense of peace in my life, should my body have this horrible reaction to stress? Why didn't my legs stop working then? And I told him I will NEVER accept that. Something is terribly wrong. I go to work every day and push myself, only to collapse when I get home. Simple chores are too much for me to handle. My legs just wont hold me up any longer. I told him when I walk into a store, I look at the wheel chairs and wish I had the courage to use them. Instead, I just don't go into the stores unless I absolutely have to.

At this point, I'm crying!! And he's standing next to me, rubbing my back. He finally said when I fealt ready, to come on out and left. I was so mad at him. One, because I've always trusted him and admired him, and 2ndly because he was now being so unfaithful to me, so condensending. I was angry too, because in all the years he's known me, I would never go to him unless I had good cause. So how could he not believe me on this??

When I pulled myself together and got to the reception area, all the staff turned and looked at me. Then the receptionist asked me what kind of doctor I was seeing outside this practice. I knew they were discussing me by the looks of things. Then I noticed my doctor on a nearby pc. I fealt betrayed that he walked out there and discussed my situation with his staff. I paid my copay, put on a smile, and left.

I got out to my car and just sobbed!! I fealt defeated. I couldn't face going back to work and smiling when I fealt so bad inside. So I waited a couple hours before heading back.

All I could think of is, where does this lead me? Just hopeless...

Today at work, my son called and said my doctor had called, said its very important and to have me return his call as soon as possible. I did call him and he said he just had a long conversation with my neuro and the neuro has agreed to take a closer look at me and wants me to call the office and scedule a time to come in. He told me they were expecting my call.

I called the neoros office, the receptionist asked me to hold, then the neuro got on the phone. He said that he just discussed me with my dr and wants to meet with me to soon. I told him I have a sceduled appointment on the 28th of this month. He said to keep this appointment because he can't be sure he could sqeeze me in sooner. Then he said that he wanted me to know he would treat this is an agressive manner.

WOW!! I was shocked. I'm not sure what happened to lead to this but somehow, I must have gotten through. Maybe over the weekend, he though more clearly about what I said to him. I don't know if my words had anything to do with this, or if they took another look at my MRI but whatever happened, I feel so much relief, that at least he was listening. This is the man I went to, that I could count on. He DID listen, afterall!!

I know this is a very long post but I wanted to share to all of you out there that keep getting knocked down, get back up!! Keep fighting and fight hard!! Doctors can break us down and make us self doubt what we know is right. I am a firm believer, go with your gut and don't ever give up!!

I may still not get answers but I also know that I will never back down. Doctors do miss things. Theres a reason for everything, and I intend to find mine!!

Good luck to all of you out there in the same boat!!

Cindy