Getting Undiagnosed

Fortunatos · 07-11-2013, 02:34 PM

Quote:

Originally Posted by Quandry

Fortunatos, I know you are well meaning, but I have been going through all this for about eleven years now. When I took Prednisone, I had suffered from prednisone psychosis. When I took Cymbalta, I bled profusely from my rectum. I'm not asking the doctor to hurry up and fix me. It's been all these years. The reason I don't take Imuran is because both my father and grandfather died of Leukemia, My Grandmother died of colon cancer, my mom had uteran cancer, my daughter had cancer of the cervix. My sister and aunt had breast cancer, and the list goes on... I've been as patient as anyone can expect, but it's been eleven years. How much more patient should I be?

The only reason I told the Neurologist about the jalapenos is because he asked me how I treated my Trigeminal Neuralgia. I didn't think I should lie about what I do. Here are some sites showing how capsaicin works, and by the way, capsaicin comes from hot peppers. http://www.ncbi.nlm.nih.gov/pubmed/1539818 http://www.webmd.com/pain-management...topic-overview http://www.researchgate.net/publicat...inal_neuralgia

I'm not some idiot who spouts out some concoction or old remedy without researching first. I would expect a neurologist who treats Trigeminal Neuralgia to know a bit more about how to relieve the pain.

I'm not saying I know more than the doctors, but I've had a lot of time to do my own research. My thoughts should not be discounted because I'm not a doctor and I shouldn't be told that I can't investigate on my own. That's like giving a doctor the right to be God. If I find something that works, I want to stick to it and I don't want to be on a million pills that cause more problems than necessary.

Are you saying we should be ignorant and allow doctors to kill us more quickly by not questioning them? In my mind, if a doctor doesn't want to be questioned, than he is arrogant. How can I trust someone who is so arrogant that while I was still talking he starting dictating over my voice and dismissed me as his nurses escorted me out of the room. He was obviously finished talking to me because I challenged him because I wanted answers. He wasn't going to investigate any further and was about to dismiss me permanently. That's when he said he'd send me to the Mayo clinic. I have to fight to get answers because if I don't stay on the pyridostigmine I may stop breathing all together.

Thank you, Quandry. I do care about you, and keep in mind that I am a patient as well. I have encountered a few bumps in my journey. For what it's worth, I kicked a neuro out of my hospital room, and told him not to come back.

Another question, if you're willing.

"...How can I trust someone who is so arrogant that while I was still talking he starting dictating over my voice and dismissed me as his nurses escorted me out of the room. He was obviously finished talking to me because I challenged him because I wanted answers. He wasn't going to investigate any further and was about to dismiss me permanently..."

Have you ever had someone accompany you to an appointment with this doctor?

Quandry · 07-11-2013, 02:59 PM

Quote:

Originally Posted by Fortunatos

Have you ever had someone accompany you to an appointment with this doctor?

Not this doctor, but my daughter went with me to the Neurologist that this guy trained and the Neurologist told my daughter (an adult) to shut up. I don't want anyone else to feel humiliated, so I won't have anyone else come with me to this doctor.

cait24 · 07-11-2013, 03:32 PM

Quandry, I have a suggestion for you. Write a summary of your symptoms and medical history from a patients perspective in chronological order. Reread it and correct it over and over, and take out and personalization of treatment by other doctors. You will need this when you go to Mayo. That way you will not forget anything, the doctor has a hard copy for future treatment reference and you will be able to focus on the more important symptoms. That way when you come back from Mayo, you can use this when you go to your NEW neuro that has no preconceived notions and will be receptive to Mayo's definitive diagnosis.

Don't let them make you play their game or get substandard healthcare. You deserve better than this. Move on to a new doctor who will treat you and your disease professionally.

Good Luck,
kathie

ginnie · 07-11-2013, 04:30 PM

Mayo clinic is a good choice. That is where I went to get to the bottom of my imedical problems as well. Do you know what to expect at that clinic?
Also don't let any doctor brush you aside when you have real concerns. being treated like that is not acceptable. You are deserving of courtesy and fair treatment. Write down all your symptoms from the beginning. This will help when you go to see this new doc. at Mayo clinic. He will have a record of your daily issues. I wish you all the best. ginnie

Gabriella · 07-12-2013, 08:09 PM

Quote:

Originally Posted by southblues

Does thymectomy help people that are seronegative and do not show any abnormality of the thymus?

I have read that it does, that some people have abnormalities that show up after the thymus is removed and biopsied, and during MRI it looked "normal". My neuro says seronegative means nothing, the symptoms are what counts.

Gabriella · 07-12-2013, 08:22 PM

Quandry, I applaud you, always always always question. One of my doctors was actually killing me (not on purpose!), I was taking a medication flaring up my mg over and over and over. And I finally (after years) put two and two together and said, wait, this med is putting me in the ER year after year!! And every doc said "no, it is not". Until finally a doc realized I had MG and said, oh yes it is. Always question, believe your body, if I did not believe my own body and advocate for myself I would not be alive right now. It is such a horrible struggle, I wish you the best and I hope you find doctors that do believe and trust what you know about yourself and your health.

Geode · 07-19-2013, 10:56 PM

Hi Quandary,

I've also been going around in circles for 13 years with trying to get a diagnosis. I'm in Arizona, too. Are you willing to share the name of this neurologist you are unhappy with? I'd like to try to avoid him.

Quandry · 07-31-2013, 04:35 PM

The pendulum has swung again, but this time back to a diagnosis of MG. The doctor who tried to undiagnose me says it is MG because of the positive Anti ach modulating antibodies. After I presented him with a copy of the positive Anti ach test and a copy of high c reactive protein he pulled away from his former diagnosis of "All in my head." He thinks that I don't need to go to the Mayo clinic after all.

This doctor said that I'm a complicated case, and I told him that I don't mean to be complicated, and he said, "It's not you, the symptoms are complicated." I hope the complication isn't the reason he tried to dismiss me so readily before.

southblues · 07-31-2013, 05:30 PM

If we are not crazy when we go to these doctors, they will drive us that way soon........

I hope that you do better now that somebody has decided what is wrong.

bny806 · 07-31-2013, 09:10 PM

I would think Dr's would be excited about a challenge.. instead it seems most of them just want a black and white answer.. just to be fast and move on.. .frustrating!!

How high was your anti ach modulating ab? Mine was 20 on a scale where 0-20 was normal.. this is after IVIG and when I wasn't too symptomatic..

southblues - seriously.. they make me feel crazy!!!

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