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JLRNL

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My big horror story.
After seeing several muscular neurologists, I decided to get one more opinion. This time I researched the internet to find a person that had some clout in the ALS network. With help from the ALS organization and many hours I found a neurologist I thought could give me a good third opinion. This neurologist was the director of the ALS clinic of one of the top 10 university medical centers in the USA. I contacted him and inquired if he would review all my previous exams and give me an opinion. I stated I would pay him for his time. He agreed yet he recommended that I also schedule an appointment with him for an examination and possible workup. This required some logistical scheduling since, I live in Europe. We made an appointment to coincide with the marriage of a daughter. So it would be three months before the appointment. He told me he would e-mail me his opinion of all my exams prior to the appointment. Waiting a month, no word from him, I called he reassured me that he would read them prior to my appointment.
The date of my appointment arrived, he never contacted me about my records, the billing office did however. My insurance would pay for the opinion, I needed to pay in advance then submit to my insurance co for reimbursement. Since I was considered an international patient, the deposit to be seen was $4000.00, yes I repeat $4000.00.
I filled out the forms the nurse gave, she then recorded my vital signs, blood pressure was high. I had forgotten my blood pressure medication that morning. I have been a hypertension patient since my mid twenties and was in the military when it started. It has always been a control problem and they have tried many different medications, it remains a high normal for me. You will understand why I bring blood pressure into this later.
I was brought to the exam room and told the MD would be with me shortly, the nurse instructed me to disrobe completely and put a gown on, I found this strange, I first wanted to speak to the physician. First a young lady came in and introduced herself as a neurologist on a fellowship at this University and would I mind her examining me. I said no, so she started the normal neuro exam. She was very gentle and kind during the exam, I will tell about one part of the exam for Babinski's reflex. She did it appropriately with a mild to moderate pressure starting at the heel and following along the outside of the foot to the ball of the foot going inwards. She repeated this on both feet a couple of times and had a positive reflex. It was by far a basic exam lasting about 5-10 minutes. When she was done she said she would now speak with the Neurologist I had come to see and they would then return. I asked her if she had read my history that had been sent. She was surprised and was not aware of any history and would ask the Neurologist- Director of the clinic.
Both Neurologists returned to the room, he introduced himself and then proceeded to start talking to me about my elevated blood pressure, he wanted me to go right then to the emergency room and get admitted because it was going to kill me before any ALS would. This shocked me. He did not want to talk with me about anything else, he kept going on and on about my blood pressure. Even after explaining to him that I have been under treatment for 35 years for the problem and it is always elevated and the specialists have and are doing what they can. No he wouldn't listen just kept going on and on. I finally told him I wanted to speak about the ALS and his opinion, he then revealed he had not read my history, that was sent to him three months prior, he had not reviewed any exams or results from any testing. He then did a 5 min neuro-exam that was worse than the MD had done before him.
Then came the most horrifying part of the exam, he wanted to test for the Babinski reflex since she had reported a positive response to him. He produced a sharp object from his pocket and proceeded to run it down the center of my foot with such pressure it produced enough pain to lift me out my chair if it had been possible. So I just laid there with tears from the pain, he repeated it 3 times on each foot. I had bruising the following morning. Then he looked at the other neurologist and stated, "see no Babinski's." Of course not the exam was straight from gitmo, If I had the strength the only reflex he would have gotten was the heel of my foot being imbedded into his face. Below is the description of an appropriate Babinski's reflex exam.

The Babinski response is often confused with the plantar response. ‘Plantar’ refers to the sole of the foot and therefore the plantar response is any response to stimulation of the sole of the foot; the Babinski test therefore reveals whether the Babinski response is present, absent, or if there is no response at all.
The method for conducting the Babinski test is very simple. A stick is used to scratch the sole of the foot from the heel, along the outside edge of the foot and then finally across the base of the toes. Even though the Babinski test is very simple it must be practiced and conducted correctly; the right amount of pressure used is very important. Too much pressure could cause the patient to move up and away from the instrument, which could lead to misdiagnosis of the Babinski response. At the other extreme, too little pressure could elicit a ticklish response in ticklish patients, which again, could cause the patient to move the foot up and away.


I guess he missed that day in medical school. He then looked at me an exclaimed, I don't know what you have, it's not ALS, I don't know what it is, he then rattled of all the diseases that had already been tested and ruled out. These were in all the medical records that had been sent to him.
Oh one more thing, he did a mental status test for memory, he asked me to tell him what were the three items he asked me to remember. I told him the first one, couldn't remember the second one until my wife blurted it out, bless her heart, she was trying to help, seeing me struggle, could not remember the last one until five minutes later and I blurted it out during his new triad about my blood pressure. He pointed his finger at my wife demanding that she take me to the emergency room, almost screaming, the blood pressure will probably kill him today when he stokes out. He then said I could come back again for more in-depth studies. I thought yeah, like that is going to happen. I was warned by a prior patient of his, that he had no bedside manner, he just has no manners. The entire exam lasted no longer that 20 minutes.
The neurologist that first gave me a diagnosis spent over 2 hours examining me physically, he was known as the University ALS Guru. So it was a wasted exam, trip and money. I have learned. I have not named the Neurologist or University due to possible retribution from them, however it was close to the DNC.
One last thing, when we were leaving they asked for the $4000.00, I almost wanted to tell them to get it from Obama care, but I restrained myself. I asked them for an itemized statement for all procedures and treatments. They came up with one level 5 physician consult and exam. I said ok that's all I'll pay for. It came to $423.35 for 1 hour total time and most of it was waiting for the exam of 20 minutes. I asked where the $4000 came from, they said it was an estimate for all future appointments and exams including another emg.

Sorry for being so long needed to get my venting out.
 

scotslassie

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Wow. Don't quite know what to say to you. That sounds like a nightmare. And they tried to charge you $4,000? There are very good neurologists in Glasgow, at The Department of Neurological Sciences, Southern General Hospital. A lot nearer to you and probably a lot cheaper too. Good luck with everything, keep us posted.
 

Ms. Pie

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That's horrible! I went through 4 Neurologists before I found one that we liked and I'm not sure of her. I'm sorry you were abused and you were abused!
 

Allie

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WOW, wish I could say that I am surprised but I am not. Heathcare in the US is a disaster ...I have heard horror stories of people spending thousands for nothing. No offense to anyone, but no thank you USA.
 

panguinjen

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Oh my, that's horrible! Please report him to the AMA just for he satisfaction of doing so... You might even get a response! I am horrified that you went through that!

Jen
 

Alyoop

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I have heard very similar stories from people going to the mayo clinic from out of USA. They are good at wallet biopsies! So sorry for that awful experience. You have one of the WORLD experts in ALS right there in NL. They even have a very careful way of putting people in a nice warm bath to get very accurate EMG results. Going to the USA, is just a waste of time if you live in Europe. You haven't mentioned why they can't get a diagnosis, and maybe you are just one of a big bunch of people, where the diagnosis remains elusive, with answers never coming. Frustrating for sure, but comforting when the neurologist cannot come out and say " you do not have ALS"!

Best wishes, any I was going to have to pay $20,000 to go to Mayo clinic. So $4000 was a bargain. I did not go!
 

vzandt

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Send a letter to the hospital and to the hospitals nearest newspaper. They hate bad publicly.
 

notme

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Wow, just how high was this blood pressure? It'd have to be dangerously high for that kind of response.

What diagnosed did the doc at home give you?
 

JLRNL

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Wow, just how high was this blood pressure? It'd have to be dangerously high for that kind of response.

What diagnosed did the doc at home give you?


163/116
Later it was 150/90
 

notme

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The 163 isn't so bad, but the 116 would have concerned them. I had a similar reaction from a doc when I went in at 185/115. They couldn't get past the BP to listen to why I was there. Apparently here in the US, a diastolic above 115 is an auto-admit to get it down. They sent me straight to the ER, and it too, them 3 fays to get it down. I'm like you, mine is very hard to comtrol, especially if I'm in pain.

I don't know that I'd have paid him at all if nothing was done. A Babinski test certainly shouldn't have bruised your foot!
I hope you took pictures of the bruising!

I'd follow up with one of the docs mentioned by the others! Sounds like just the appt stress made ot jump if it went back down to somerhing reasonable. Your records probably already noted the high BP status.

What diagnosed do you have from docs at home?
 

RLA1973

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That's terrible! Not to take anything away from your post but the worst thing about ALS is we all have some type of horror story. I haven't been confronted by mine yet I guess. I am new to this forum and new to ALS. If I give you guys a little info about me can someone help me. I am 39yr. old male. I have been in great shape all my life (gym, running etc..) about 5-6 years ago I started to have symptoms. Thing that's bad is they all seem to come and go and happen at different times (at least with me). I had to trace all this back trying to remember what I can. Of coarse I've been through all the symptoms pretty much. I remember almost to the day telling my Mom that their was something wrong with me. Yes, I told her that when I was younger (ex. didn't feel like you fit in) but this was different and I remember exactly what I said, "Mom, It feels like my body is turning on itself." And we all saw and talked about the symptoms over the years but my case made this very difficult. I was going through a divorce, lost job, no money but worse was I couldn't imagine life without waking up every morning and hearing my son and daughter running and playing in the house. When I look back on all this I can say this disease has destroyed my life. If not for extreme fatigue and lack of sleep as well as stress problems I may have been able to hold my job and my marriage. Due to all of these over-whelming things at one time I went through rehab for depression (not drugs etc.) but actual in-patient hospitalization. And as the story goes....after stating every problem over and over at every visit with all psychiatrists they labeled me Bi-Polar. I accepted it. What else could I attribute it too? But guess what? Symptoms never changed, ever. The addition and subtraction of numerous meds I did get relief... And the relief...a little better sleep thats all! I will post other things that happened in my story later but when confronted with things like loss of muscle control, stiffness etc... It was Always the meds that could be doing this! So around a year or longer I remember my swallowing and feeling something may be in my throat... I shrugged it off as nothing. My mom said that because I used dip or chew tobacco that I was going to end up with oral cancer. So about a month ago something strange happened, I suddenly awoke it the night and felt I couldn't breath (not being able to breath because I felt my neck/throat swollen. The next day I ran to a PCP, told her my concerns. She set me up with a Ear/Nose/Throat Dr. Went in exspressed my oral cancer concerns. Checked my mouth..ok....checked down my nose...ok....shoved basically his whole am down my throat and said he didn't feel anything abnormal...checked a slightly swollen lymph on my neck and said any common cold could cause that. I said Dr. I know somethings just not right. He said ok, scheduled me a CT, 2 days before CT I had to go out of town. I called and rescheduled it. Not supposed to have it until the following week. But in the meantime other symptoms popped up. Thank God I stumbled across this. I am 100% sure this is what I have. Nothing can explain it all like this. I even awoke a couple days ago with a weird peace throughout my body. (I didn't hear anything or see anything...no hallucinations) but something in my body said Look Lee, this is what you have. It may be difficult to accept but you are strong. Remember I wouldn't let anything happen to you that you could not handle. You will be fine...You will get such relief by knowing and others knowing this about you. All of the last several years burdens will be fully explained. Now I firmly believe in GOD. I am a Christian but I believe in other peoples faith as well and I do not judge. I think God spoke to me through my heart that night. Also, you ever watch Operah( I don't) but I remember women commenting about sickness (primarily cancer) all they kept saying was listen to your body, it will tell you whats wrong or what it needs). Look I'm a dude.....What do I know about a woman's body, not jack! But my body did tell me about my ALS. I've got to wrap this up....I read that difficulty swallowing and breathing are late symptoms and I know everybody's cases are different. My breathing the last few days seems to be a bit more labored. Look I got a 11 yr. old and a 9yr. old. I want to spend as much quality time with them as possible but what I want them to fully understand before I go is that God is Good. God did not put this on me and he didnt allow anything to be so great I couldn't handle. I just want to know with all of you guys experience with this disease...on the average...at this point...what should I expect before I may not be able to function somewhat normally. 3 months...6 months...I'm not looking for a definate and if I do last longer than your recommendation I will not haunt you and say you were wrong. I just want to know how long can my kids see I'm normal before they see otherwise. How much QUALITY time would you say I have? Please respond...This is my only post and I have no info or help or advice regarding ALS? Any comments would be great even if they might not be what I really want to hear. Thanks for reading this..looking forward to your help..... Lee
 

JLRNL

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The 163 isn't so bad, but the 116 would have concerned them. I had a similar reaction from a doc when I went in at 185/115. They couldn't get past the BP to listen to why I was there. Apparently here in the US, a diastolic above 115 is an auto-admit to get it down. They sent me straight to the ER, and it too, them 3 fays to get it down. I'm like you, mine is very hard to comtrol, especially if I'm in pain.

I don't know that I'd have paid him at all if nothing was done. A Babinski test certainly shouldn't have bruised your foot!
I hope you took pictures of the bruising!

I'd follow up with one of the docs mentioned by the others! Sounds like just the appt stress made ot jump if it went back down to somerhing reasonable. Your records probably already noted the high BP status.

What diagnosed do you have from docs at home?


Dx. is probable ALS
 

notme

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JLRN,

I guess I'm a bit confused, then. The doctor here never even looked at your stuff while you were there? Heck, I would have demanded he do so. I wouldn't have moved from that table til he could tell me what his interpretation was of the test results combined with the exam he did a half a$$ job of. If he hadn't looked at them ,I wouldn't have given him a nickel, let alone $400.

Are you still in the states or back home? If home, are all the prior EMGs saying ALS is the likely culprit, or is there more to rule out stil?

I'm kind of where you are in that the doc knows something UMN is going on, but doesn't know what. Is it a case where there are no UMN or no LMN, or was this whole exercise to seek a 2nd opinion? Not ALS, which is great....but what finding did he base that on?

I guess I should have gone back and read your other posts to know your story a bit. My memory isn't what it once was.

You're far kinder than I am. I'd have gone off the deep end. Seriously, I'm outraged at your experience. Are there no good docs where you live?

Heck. I'd be happy to send you the info on mine. She's the head of the ALS clinic for the univ. hosp. shes at.

I'm so sorry you were treated so badly. Do you have no outward signs of anything wrong?
 

notme

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Lee,

At the top of the page is a place that says ALS and MND support Group. Click that. From there, click the forum called DO I HAVE ALS.

Start a thread there.

Please, use paragraphs, not one huge block of text. It's nearly impossible to read.

Next, write down your symptoms and when they started.

Next...in that post explain what the point is of not going to the doctor to see what is going on with you.

I have not read one thing in any of your posts that sounds even remotely like ALS. If you have seeping sores all over your body, dark urine and difficulty breathing, for heavens sake, go to an emergency room.

ALS won't cause ANY of those things.

In ALS, breathing worsens gradually, not overnight, or even over a couple of days. No one here will give you a timetable! You could be seriously I'll with something treatable, but you're so convinced its ALS, you're not getting any kind of treatment.

I think one post said something about seeing 40 docs in the past? Whatndidmthey say was wrong with you? What, if any, tests have you had?

If you had truly had ALS for years, you'd be in a wheelchair by now at the very least.

Why in the world do you think it's what's wrong with you? No one here can say its not...but it sounds like the doc found no issues that suggest bulbar signs...and if they were present, he would have.

You're throwing your life away based on Internet research of a rare condition it's very unlikely you have. Want to seemthosemkids grow? See a good doctor and let them diagnose and treat you.

Best wishes.
 

JLRNL

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JLRN,

I guess I'm a bit confused, then. The doctor here never even looked at your stuff while you were there? Heck, I would have demanded he do so. I wouldn't have moved from that table til he could tell me what his interpretation was of the test results combined with the exam he did a half a$$ job of. If he hadn't looked at them ,I wouldn't have given him a nickel, let alone $400.

Are you still in the states or back home? If home, are all the prior EMGs saying ALS is the likely culprit, or is there more to rule out stil?

I'm kind of where you are in that the doc knows something UMN is going on, but doesn't know what. Is it a case where there are no UMN or no LMN, or was this whole exercise to seek a 2nd opinion? Not ALS, which is great....but what finding did he base that on?

I guess I should have gone back and read your other posts to know your story a bit. My memory isn't what it once was.

You're far kinder than I am. I'd have gone off the deep end. Seriously, I'm outraged at your experience. Are there no good docs where you live?

Heck. I'd be happy to send you the info on mine. She's the head of the ALS clinic for the univ. hosp. shes at.

I'm so sorry you were treated so badly. Do you have no outward signs of anything wrong?

I have learned patience through the years. This man is also the director of the ALS clinic at his University. In the Netherlands the system is the one Obamacare has been patterned after and it stinks. I takes forever and the MD's are still looked after like gods.

Also being a medical professional I was just dumbfounded for those moments, wondering which Cracker Jack box he got his medical license from and which preschool he did his residency.
 
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