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Old 06-24-2013, 03:37 PM #21
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Quote:
Originally Posted by Tracy9 View Post
I have four positive blood tests from different labs.

He said my blood tests didn't count because they weren't from the Mayo Clinic and that is the only lab he believes in.

I asked him if the fact that I was on IVIG/mestinon.... and he said no.
Tracy, I had to read your post twice, and skim it again. While I am not a doctor of medicine, I can say with confidence that the majority in my region who present with clinical symptoms, and a positive blood test would not only be likely to get a diagnosis but would be on the list for a thymectomy. I can also say with confidence that it's unlikely that a person without a diagnosis, would get IVIG either, unless it's critical or the doctor is iffy.

You have a neuro who diagnosed you, but he won't do a thymectomy?

Did anyone look at your chest, either by x-ray or MRI?

I'm just not getting this...
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Old 06-25-2013, 09:44 AM #22
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To add to my confusion, Mayo Medical Labs report the lowest positive values at
< or =0.02 nmol/L. As well, there is the following caution: "...Antibodies may disappear with immunosuppressant therapy..."

I was not present to hear your discussion with the doctor, however, I'm shrugging my shoulders...
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Old 06-25-2013, 03:45 PM #23
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Fortunatos, can you give me a link to the quote by Mayo about immunosupression and the test results. I need a copy of this for my neurologist, it is a very important point as I have been immounosupressed when I took the blood test and had negative results while taking Imuran for 3 years.

Thanks

Joe
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Old 06-25-2013, 10:28 PM #24
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Originally Posted by joefnh View Post
Fortunatos, can you give me a link to the quote by Mayo about immunosupression and the test results. I need a copy of this for my neurologist, it is a very important point as I have been immounosupressed when I took the blood test and had negative results while taking Imuran for 3 years.

Thanks

Joe
Joe, My apologies for not posting the link. Here she blows...

http://www.mayomedicallaboratories.c...rpretive/83369
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Old 06-25-2013, 11:27 PM #25
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Dear quandry,
no one needs to get you into the Mayo Clinic. You can just call and make an appt. They have very skilled people who answer the phones who will help you get an appt with the correct Dr for your condition. Or help you make an appt with Dr of your choice. I've done this before, not for MG, but for another condition and got right in the same day! I was lucky but it can happen.


Bobcat

Last edited by Koala77; 06-26-2013 at 01:14 AM. Reason: Link removed as per guidelines for new members.
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Old 07-10-2013, 07:18 PM #26
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I went to the Rheumatologist that diagnosed me. He talked to the Neuro and the Neuro told him that I don't have MG and that the fact that the Pyridostigmine works on me is purely psychological and that he was closing out any more work on me. The Rheumotologist told him, "no", and he is going to get to the bottom of what's going on with me. However, I have to go back to the doctor who thinks it's all in my head and get a referral to the Mayo clinic; something I thought was already in the works. The Rheumotologist is still giving me the pyridostigmine in the meantime. I hope they don't take it away.
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Old 07-10-2013, 11:34 PM #27
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Hang in there Quandry, you have one doctor who wants to get to the bottom of this and positive lab results on your side. The MAyo clinic will not dismiss them so easily. you are going to one of the best facilities for MG in America. I am sure you will have a positive experience.

kathie
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Old 07-11-2013, 12:06 PM #28
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Thank you all for your responses. I am very happy that there is a doctor who is willing to fight for me and it seems that in these days he is a rare doctor. I do hope that the Mayo clinic can get to the bottom of what is going on.

One thing that bothers me about the Neurologist is him saying that my reaction to pyridostigmine is psychological. I take 60 mg four times a day. I think this amount might make me weaker if I was normal. Sure, it does make some muscles in me weaker, but my breathing is improved. I may be overdosing some muscles, but breathing is more important than anything else and the majority of muscles benefit from this. If it were psychological then I would have continued to take other meds to appease my doctors, but I haven't. I refused prednisone because of a bad reaction. I refused Cymbalta because of a bad reaction. I've refused Imuran because of a high cancer risk due to many family members with cancer. I've even been scoffed by this Neurologist for treating my jaw pain with Capsaicin and by chewing on hot peppers to relieve pain along the gum line, but I know it helps. So, if I know the difference between what works and doesn't work, then how can a doctor be so dismissive and accuse me of imagining that pyridostigmine works?

The whole time I spoke with this doctor he was demeaning and arrogant. He hammered me about having both negative and positive results in the past. He hammered me about everything as if I was on trial with remarks like "Oh, so you had negative results before, and Oh, you had this before, blah, blah, blah. If I signed a release of information, shouldn't he know all this?

I can't always remember to tell a doctor every detail with so much going on. Don't doctors do anything more than just review their own notes? When I told him about chewing on jalapenos for my pain he said "So, you rub jalapenos on your gums." I said, "I chew on them." He said again, "So, you rub jalapenos on your gums." It was like whatever. He kept changing whatever I said. Everything I said he kept misinterpreting. He totally dismissed some of the facts he noticed on my first visit. I told him my legs weren't as bad as my upper body, but when he had me lift my leg while in a sitting position, it was him that said my legs were weak too. How can he say he's going to close the book on me without following up? How can he twist things that I say around like a sleazy lawyer? The other Neurologist I used to go to was trained under this one and now I can see why I never got results. I'm am just so frustrated because it seems that some doctors don't do their homework anymore, but I do really appreciate that the Rheumatologist is fighting for me and is willing to think outside the box.
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Old 07-11-2013, 12:40 PM #29
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Quote:
Originally Posted by Quandry View Post
"...I am very happy that there is a doctor who is willing to fight for me..."

"...I refused prednisone because of a bad reaction. I refused Cymbalta because of a bad reaction. I've refused Imuran because of a high cancer risk due to many family members with cancer. I've even been scoffed by this Neurologist for treating my jaw pain with Capsaicin and by chewing on hot peppers to relieve pain along the gum line..."

So, if I know the difference between what works and doesn't work, then how can a doctor be so dismissive and accuse me of imagining that pyridostigmine works?..."
Hello Quandry I'm glad you have such a good relationship with your Rheumatologist. Often, all it takes is one, good doctor to get you through to a diagnosis. It's not uncommon.

I'm going ask you to think about something. Keep in mind that I am just offering you and many others in your situation...food for thought.

Sometimes, not always, but sometimes when we refuse medications that could be of help, we are sending mixed-messages. Here's what a doctor might hear. "Hurry up and fix me, but I'm not taking any meds. I know what's wrong with me so I'm going to tell you what to do. I won't do most of what you ask but help me." And while I believe very much in some of the old remedies, telling your doctor that you are munching on hot peppers isn't helping the situation.

So, give this some thought. Ask yourself again, why you aren't prepared to let him help you...take some time with this. I risk having you mad at me, but that's okay, Quandry. You (and everyone) else are worth it.
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Old 07-11-2013, 01:30 PM #30
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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.
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