Aa
Time to rant!
I went to Detroit Medical Center today. I went with such high expectations, high hopes, after all, they are ranked third in the nation. I answered all their questions. I told them about the problems I had been having lately. I answered all the questions they asked. They asked why I would come there when I had a neurologist, and I said that I wanted to explore the possibility that it may not be Primary Progressive because I had some symptoms that acted like a flair. I was honest in telling them he had stopped doing anything, he never even discussed the possibility of any medications that might help. I said maybe, just maybe there was a medication that would slow my progression, after all, they are ranked third in the nation.
She showed distrust when I disagreed with things he had written in my chart, but they were simple things like "was I taking B-12 like he told me?" and I said I was not because he had not told me that. I dragged myself down the hall and back while she timed me with a stopwatch. I tried to keep the all the dates and timeline straight. I told her that she was going too fast for me to process the information and questions, but she kept on going. I answered all her questions, I really did. She asked what problems I was having, and I tried to tell her, but she did not give me time to answer before she moved on through her own agenda.
Then we got to the wheelchair...why was I using one? When did I begin using one? She did not listen to my answers. When did I begin using a cane? Why was I already using a wheelchair? When did I begin using one? Was I using the cane? Over and over again. I felt like I should have been in an interrogation room with bright lights in my face like in the movies.
Then dragging myself down the hall again for the neurologist, and answering all his questions again. The kicker is that the "She" is a student, and the "He" is the neurologist. She spent 45 minutes. He spent ten minutes.
Then the gavel fell. He said the 30-40+ lesions he saw in my MRI's did not impress him to think it is MS at all. The fact that the clear spinal MRI's and the clear lumbar puncture impressed him to think it WAS NOT MULTIPLE SCLEROSIS! So, I asked what he thought it was. He said he had no thoughts that he would express yet. He wants a full study of EMG's of my legs, and my lower back, they may tell him something. Maybe, just maybe that, even though he did not think it could be peripheral neuropathy, if the EMG's show weakness he was leaning toward saying it was peripheral neuropathy. Really? Are you kidding? I think you just contradicted yourself.
He even said the atrophying of my legs was because I was losing weight, because they still showed shape and musculature. OF COURSE THEY DO! I WAS A 100 MILE BICYCLE RACER ONLY 2 YEARS AGO! HE EVEN SAID HE HAD A PROBLEM WITH THE FACT THAT THE SYMPTOMS CAME ON SO SUDDENLY, AND THERE SHOULD HAVE BEEN SIGNS LONG BEFORE THERE WERE ANY!
My head is spinning. He said, 'get the EMG's done, then come back to see him.' Why would I do that when he said plainly that they would only say that it might be peripheral neuropathy, especially when everything in his tone said that he thinks it is all in my head? He never really said it, but, oh, he said it.
NOW WHAT?
I want so badly to cry, but I am afraid to let myself cry for fear I will totally break down.
I had such high expectations, high hopes..............................
Most sincerely,
Beth
She showed distrust when I disagreed with things he had written in my chart, but they were simple things like "was I taking B-12 like he told me?" and I said I was not because he had not told me that. I dragged myself down the hall and back while she timed me with a stopwatch. I tried to keep the all the dates and timeline straight. I told her that she was going too fast for me to process the information and questions, but she kept on going. I answered all her questions, I really did. She asked what problems I was having, and I tried to tell her, but she did not give me time to answer before she moved on through her own agenda.
Then we got to the wheelchair...why was I using one? When did I begin using one? She did not listen to my answers. When did I begin using a cane? Why was I already using a wheelchair? When did I begin using one? Was I using the cane? Over and over again. I felt like I should have been in an interrogation room with bright lights in my face like in the movies.
Then dragging myself down the hall again for the neurologist, and answering all his questions again. The kicker is that the "She" is a student, and the "He" is the neurologist. She spent 45 minutes. He spent ten minutes.
Then the gavel fell. He said the 30-40+ lesions he saw in my MRI's did not impress him to think it is MS at all. The fact that the clear spinal MRI's and the clear lumbar puncture impressed him to think it WAS NOT MULTIPLE SCLEROSIS! So, I asked what he thought it was. He said he had no thoughts that he would express yet. He wants a full study of EMG's of my legs, and my lower back, they may tell him something. Maybe, just maybe that, even though he did not think it could be peripheral neuropathy, if the EMG's show weakness he was leaning toward saying it was peripheral neuropathy. Really? Are you kidding? I think you just contradicted yourself.
He even said the atrophying of my legs was because I was losing weight, because they still showed shape and musculature. OF COURSE THEY DO! I WAS A 100 MILE BICYCLE RACER ONLY 2 YEARS AGO! HE EVEN SAID HE HAD A PROBLEM WITH THE FACT THAT THE SYMPTOMS CAME ON SO SUDDENLY, AND THERE SHOULD HAVE BEEN SIGNS LONG BEFORE THERE WERE ANY!
My head is spinning. He said, 'get the EMG's done, then come back to see him.' Why would I do that when he said plainly that they would only say that it might be peripheral neuropathy, especially when everything in his tone said that he thinks it is all in my head? He never really said it, but, oh, he said it.
NOW WHAT?
I want so badly to cry, but I am afraid to let myself cry for fear I will totally break down.
I had such high expectations, high hopes..............................
Most sincerely,
Beth
Beth,
Too bad I'm not your neighbor because I could come over, bring a good bottle of something and share your woes for a while. I can see where this would leave you reeling and so unsure, and a bit of hand holding and hand wringing is definitely in order..
If this were me, and I realize it is not, I would return to this group and see what their tests reveal. If I was told I might not have MS, I sure the heck would want to know what else it might be and if there were treatment for me.
I'm with the answers you have already received with their advice. These docs are trained to be detached observers, to try to evaluate the psychological state of their patients, and to separate the physical symptoms from what might be emotional. It is all in their schooling and it sounds like this student was trained in this method.
Peripheral neuropathy can be easily tested with the EMG - I have PN in my right leg but I also have MS symptoms on my EMG testing.
I hope you get a good night's rest and can think this through tomorrow. I'm so sorry you have been left hanging this way.
gentle hugs,
Lulu
Too bad I'm not your neighbor because I could come over, bring a good bottle of something and share your woes for a while. I can see where this would leave you reeling and so unsure, and a bit of hand holding and hand wringing is definitely in order..
If this were me, and I realize it is not, I would return to this group and see what their tests reveal. If I was told I might not have MS, I sure the heck would want to know what else it might be and if there were treatment for me.
I'm with the answers you have already received with their advice. These docs are trained to be detached observers, to try to evaluate the psychological state of their patients, and to separate the physical symptoms from what might be emotional. It is all in their schooling and it sounds like this student was trained in this method.
Peripheral neuropathy can be easily tested with the EMG - I have PN in my right leg but I also have MS symptoms on my EMG testing.
I hope you get a good night's rest and can think this through tomorrow. I'm so sorry you have been left hanging this way.
gentle hugs,
Lulu
Beth,
I hope you get the rest you deserve and when you wake the sun is shining to wash away some of the terrible pain that you are experiencing from this ordeal.
I couldn't cope with the magnitude of your situation.
I really feel for you and want you to know I am sending you big hugs.
Blessings
Alex
I hope you get the rest you deserve and when you wake the sun is shining to wash away some of the terrible pain that you are experiencing from this ordeal.
I couldn't cope with the magnitude of your situation.
I really feel for you and want you to know I am sending you big hugs.
Blessings
Alex
Did you even read my post?
I went "armed" with all the same stuff you said you took, the films, results of the LP which put me in the hospital for 3 days because it kept leaking, causing me to have a blinding headache, answers from 22 vials of blood they took. Mine did not say he was "fairly sure" it was MS. He said that it could not be MS. This despite the fact I was diagnosed with PPMS by another neurologist in July 2010, verified by his further testing allowing him to pronounce it definately PPMS in February 2011. Over that nearly year and a half I have continued to exhibit constant, textbook symptoms. Let me repeat, my diagnosis at that point was 1 1/2 years old. Forgive my sharp tongue, but I am sick to death of the idea that we are supposed to give doctors, especially specialists an extra nod of worship because of all the training they have undergone. Do I not have the right to decent treatment and a modicum of respect simply I am a human being who is suffering?
I was only asking him to look at everything, including the flares that have happened since, and see if he thought a DMD might be in order at the juncture. I did not mean to hurt his feelings by asking for an immediate announcement.
If he wanted more MRI's of his own he certainly could have ordered them on the spot. Instead, he asked for a battery of EMG's that are no more useful in diagnosing an already diagnosed disease than peeing in a cup!Noting also that he finished by stating that if they showed weakness he would diagnose something he had just said I more than likely did not have.
The negating of my diagnosis was bad enough, but it was the disrespect and condescension that I am equally addressing. I am now thinking I would have done better going to my cat's veterinarian.
Now, I fear that I could even lose my Social Security Disability because of his call. Then what? I would continue to be unable to carry steady, gainful employment. I never know when I rise every morning if I will even be able to ambulate down the hall to retrieve a cup of coffee that I often feel too poorly to enjoy, but I will give him that month, indeed I will. I will be giving him a great deal more time than that to ponder my malady. What is the phrase?..."When pigs fly!"
Well, there you are. The second, and very final chapter of a nasty, bitey memoir I shall entitle, "The raving lunacy of a woman who was pushed just a bit too far to maintain her equallibrium." Subtitle, "She wished she had known what killed her."
Most definately sincerely,
Beth Thank you, and good night.
I went "armed" with all the same stuff you said you took, the films, results of the LP which put me in the hospital for 3 days because it kept leaking, causing me to have a blinding headache, answers from 22 vials of blood they took. Mine did not say he was "fairly sure" it was MS. He said that it could not be MS. This despite the fact I was diagnosed with PPMS by another neurologist in July 2010, verified by his further testing allowing him to pronounce it definately PPMS in February 2011. Over that nearly year and a half I have continued to exhibit constant, textbook symptoms. Let me repeat, my diagnosis at that point was 1 1/2 years old. Forgive my sharp tongue, but I am sick to death of the idea that we are supposed to give doctors, especially specialists an extra nod of worship because of all the training they have undergone. Do I not have the right to decent treatment and a modicum of respect simply I am a human being who is suffering?
I was only asking him to look at everything, including the flares that have happened since, and see if he thought a DMD might be in order at the juncture. I did not mean to hurt his feelings by asking for an immediate announcement.
If he wanted more MRI's of his own he certainly could have ordered them on the spot. Instead, he asked for a battery of EMG's that are no more useful in diagnosing an already diagnosed disease than peeing in a cup!Noting also that he finished by stating that if they showed weakness he would diagnose something he had just said I more than likely did not have.
The negating of my diagnosis was bad enough, but it was the disrespect and condescension that I am equally addressing. I am now thinking I would have done better going to my cat's veterinarian.
Now, I fear that I could even lose my Social Security Disability because of his call. Then what? I would continue to be unable to carry steady, gainful employment. I never know when I rise every morning if I will even be able to ambulate down the hall to retrieve a cup of coffee that I often feel too poorly to enjoy, but I will give him that month, indeed I will. I will be giving him a great deal more time than that to ponder my malady. What is the phrase?..."When pigs fly!"
Well, there you are. The second, and very final chapter of a nasty, bitey memoir I shall entitle, "The raving lunacy of a woman who was pushed just a bit too far to maintain her equallibrium." Subtitle, "She wished she had known what killed her."
Most definately sincerely,
Beth Thank you, and good night.
When I first saw my current neuro, I went armed with brain and c-spine films, an array of blood work and LP results. All of the data had been generated within the previous 60 days. He did a complete neuro exam. He then spent 45 minutes asking me questions. He basically said thank you very much and said that he was fairly sure it was MS but wanted to digest all of the information before stating so definitively. I then scheduled another appointment.
At the second appointment he led with Based on all of the data you have SPMS. We then spent 90 minutes talking about what that meant and mapping out a game plan. This guy is amazing!
I tell this tale because it sounds like you were in a similar predicament. Bringing a doc tests and results other people ordered and expecting him to make a pronouncement. I don't think these folks work that way. While my neuro was willing to work with the data presented, he wanted time to carefully consider it in combination with his clinical exam. I got my pronouncement a month after the first visit.
If these people are Ranked # 3 in the country I would give them time to consider your case before the reach conclusions.
Just one man's opinion.
Kyle
At the second appointment he led with Based on all of the data you have SPMS. We then spent 90 minutes talking about what that meant and mapping out a game plan. This guy is amazing!
I tell this tale because it sounds like you were in a similar predicament. Bringing a doc tests and results other people ordered and expecting him to make a pronouncement. I don't think these folks work that way. While my neuro was willing to work with the data presented, he wanted time to carefully consider it in combination with his clinical exam. I got my pronouncement a month after the first visit.
If these people are Ranked # 3 in the country I would give them time to consider your case before the reach conclusions.
Just one man's opinion.
Kyle
heartfelt answered so well! Same path of thinking as me, but better said.
I've had a similar type of experience at a first visit with a neuro. The part that lacks is good feedback but that is often the case during a first visit.
I've had a similar type of experience at a first visit with a neuro. The part that lacks is good feedback but that is often the case during a first visit.
Hmmm. That's a lot to take in. My head is spinning too trying to second guess his thinking.
My gut instinct is that you go back. Their rapid questioning, although disorienting to you can give them information. They may be looking, listening and thinking more than you realize.
Did this visit include a neurological examination?
A good cry can release the frustration you are feeling. I always reserve the right of "I'll cry if I want to, cry if I want to......" on an as needed basis.
I'm not sure why, but I don't think this visit was a waste.
Let us know how you are feeling once you've had a chance to process this neuro visit.
My gut instinct is that you go back. Their rapid questioning, although disorienting to you can give them information. They may be looking, listening and thinking more than you realize.
Did this visit include a neurological examination?
A good cry can release the frustration you are feeling. I always reserve the right of "I'll cry if I want to, cry if I want to......" on an as needed basis.
I'm not sure why, but I don't think this visit was a waste.
Let us know how you are feeling once you've had a chance to process this neuro visit.
I read your post and I'm so sorry that you went through this. Were u already dx? If you were I feel that he probably did not want to go against another doctor. If I were you I wouldn't give up. And, please don't lose hope that you will find the answers that you need. Doctors can be very rude and disrespectful to patients and they simply don't deserve that kind of treatment. I'm going to say that this neurologist probably does not know your whole medical case because of a lack of time on his part. Please, don't feel this is your fault in any way. I would do the Emgs that he wants you to do. Then, I would go back for the results of them with him. If you know in your heart that something is not right. I would look him in the eyes and say I have concerns that need to be addressed and I would like to have the opportunity to explain them to you. That is if you can take that time with me or have the time for me? Don't be rude to him in any way but, be very to the point. Make sure he know that your not playing around because when it comes down to it. Your life is in his hands the same with many other doctors...
I'm going to be very honest with you and tell you the reason why the same questions were asked over and over again. They wanted to see if you answered the same every time. It was a test. This was not on their part being ingorant in any way. I would say that it could have been a memory test or even a physological test. If you understand what I'm saying.
Please don't feel that you did anything wrong.. because u simply did not do anything wrong. When, I read your post I felt bad and needed to respond.
These are only my opinions. I would be strong and face this head on. Don't give up. If he can't answer any of your questions you say thanks for your time but, I think that I need to continue searching for my answers because I know my body and something isn't adding up. Thank him again and then walk out. If he is a great doctor in the end this will come back to him evenually even if you are no longer his patient.
I would really do alittle bit more research as far as being ranked 3 in the nation because I think this could be not right as far as the rankings. Do more research on this please ! It could be very important for you awhile your searching for answers.
Remember, that you are worth it. Please, don't give up. Be strong. You can do this. Keep in mind that these doctors are also protecting theirself. But, you deserve answers, trust, respect, and above all honestly. If he thinks its all in your head ask him that. Say, to him I'm getting the impression you think I'm making this up? See what his answer to you is? This is your right to know what going on so, instead of him putting you in the spot light you put him in the spot light. And, awhile you r there with him. Remember you are paying him/ insurance that we pay into. He is not paying you !!!! There is no excuses for these doctors you either like your job and are dedicated or your not and your simply in it for the money which is more than likely the reason. The medical field has really changed over the years.
What ever happened to looking at patients as people with lives that have family? It's sad but this doesn't happen that offten. And, when it does we need to be very thankfully in every way because its then when these doctor are finally putting their heart into their job. And, not their ego.
God is watching over you. I know you can do this!!!
I hope this help you to focus on how to move forward. I also hope that things go smoothly for you.
Sending you lots, lots, of hugs.
Misty........... This is just my opinion. And, I hope others will come on and be able to help u too get through this take care.
I'm going to be very honest with you and tell you the reason why the same questions were asked over and over again. They wanted to see if you answered the same every time. It was a test. This was not on their part being ingorant in any way. I would say that it could have been a memory test or even a physological test. If you understand what I'm saying.
Please don't feel that you did anything wrong.. because u simply did not do anything wrong. When, I read your post I felt bad and needed to respond.
These are only my opinions. I would be strong and face this head on. Don't give up. If he can't answer any of your questions you say thanks for your time but, I think that I need to continue searching for my answers because I know my body and something isn't adding up. Thank him again and then walk out. If he is a great doctor in the end this will come back to him evenually even if you are no longer his patient.
I would really do alittle bit more research as far as being ranked 3 in the nation because I think this could be not right as far as the rankings. Do more research on this please ! It could be very important for you awhile your searching for answers.
Remember, that you are worth it. Please, don't give up. Be strong. You can do this. Keep in mind that these doctors are also protecting theirself. But, you deserve answers, trust, respect, and above all honestly. If he thinks its all in your head ask him that. Say, to him I'm getting the impression you think I'm making this up? See what his answer to you is? This is your right to know what going on so, instead of him putting you in the spot light you put him in the spot light. And, awhile you r there with him. Remember you are paying him/ insurance that we pay into. He is not paying you !!!! There is no excuses for these doctors you either like your job and are dedicated or your not and your simply in it for the money which is more than likely the reason. The medical field has really changed over the years.
What ever happened to looking at patients as people with lives that have family? It's sad but this doesn't happen that offten. And, when it does we need to be very thankfully in every way because its then when these doctor are finally putting their heart into their job. And, not their ego.
God is watching over you. I know you can do this!!!
I hope this help you to focus on how to move forward. I also hope that things go smoothly for you.
Sending you lots, lots, of hugs.
Misty........... This is just my opinion. And, I hope others will come on and be able to help u too get through this take care.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
