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rose

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Hi, just wanted to vent to someone that would understand my frustration, and also understands EMG and NCV findings....

I am done, through, and finished with a certain neurologist in NYC!

I saw him on the 28th of August because my laryngologist wanted to do another follow up EMG of my vocal cords and also check the tongue, and he's the neurologist she does it with. So, a couple of weeks ago this neuro and my throat doctor did the EMG (my other one was the end of last October, so it had been almost a year) the EMG showed mostly denervation this time with the vocal cords, but the pattern of chronic denervation/reinnervation in the tongue. (none of this is really the point of my rant, its just background info).

Anyway, I have my first ALS clinic visit scheduled down at Hopkins at the end this month, and, as the last time I was seen by the neuro there, I was having no real trouble with my legs, other than the beginning of some weakness. I reasoned that it would make sense to go ahead and have a repeat EMG of limbs before I went down there (I had a limb one at Hopkins in April and it was normal). Its a three hour drive to go to Hopkins, and it seemed so much easier just to do it locally.

I came home in tears. He just is the most frustrating doctor! I had the NCV, it was completely normal. Then he comes in to do the EMG, and I began to explain to him where I feel weak, and where the twitching is, and he wouldn't''t listen. He kept cutting me off, he said: its a "global" disease, and if you've got it in one limb, you'll have it in all of them. (can this be true?)

So, he begins the test, and I asked him (was really assertive for me, actually) if he could please explain what he was finding during the test a little as he went along. But no, he wouldn't say a word to me other to tell me that I was going to feel a "stick" before he would put the needle in wherever it was going.

He wanted to do one side of my body only, (one arm one leg). He did one stick in my shoulder, and it was fine. When he got to my hand, there was static and he kept telling me to relax my fingers, but they were relaxed, even though they kept curling under some. So there was noise. He'd press on my hand to make it lay flat, and while he was pressing on it, the static sound, which never was very distinct (comparing it to what I've heard with my vocal cords and tongue) went away. He wouldn't explain anything and I couldn't see the screen.

He moved down to my leg, and I asked if he could please stick it in where my foot twitches most of the time, and he didn't want to do it, because it would "hurt" there. I told him I didn't really care, after the vocal cord EMG's I've had done, my perspective as to what actually hurt was relative. So, he put it in the arch area of my right foot. There was static. He kept telling me to relax it, and as it was relaxed, he finally acknowledged that there was activity going on, but wouldn't say when I asked him anything more specific..... And, would he stick the other foot (?) no no no, "no need to, because my arm was ok, and it therefore wouldn't have diagnostic value. Like finding it in one foot was all he needed to satisfy a certain requirement, That was it, he stuck it once in my calf and thigh, and both were fine, but refused to put in down lower near the ankle where I see the twitches. (like midways between the calf and the ankle bone) He also refused to test my other arm and leg. He wouldn't tell me in more detail about anything he found. Just that he'd only found problems in one muscle, and as MND was "global" (he kept saying this) that he wasn't so sure of my doctor down at Hopkins findings ~ I could still have some "exotic" rare neuromuscular disease other than her thinking that it is MND. However, he had no thoughts as to what that disease could be, and said emphatically when I asked, that it absolutely wasn't MG.

I said my arms and calves ached, especially my forearms radiating out from the elbow, particularly when I awoke in the morning, but throughout the day too, and he said, nope, ALS certainly did not cause pain. Something else other than MND was causing that.

Then he relented a bit, and said to come in his office. He tested my reflexes, but wouldn't tell me what they were, (I asked) just that they were brisk and brisker than they were when he saw me in December. I said that my doctor at Hopkins said she thought at this point I had primarily UMN involvement, and he even disagreed with that, said my bulbar was LMN, so the EMG's of my throat an tongue as well as the limb one today wasn't clean, and therefore PLS was ruled out (I never asked him if I had PLS) As I had no clonus, and my reflexes although brisk, weren't hyper he didn't think I "clinically" had UMN involvement at all. He even noted how tight my tendons are (Its so obvious, unfortunately) but that, to him, didn't necessarily mean UMN ...

Anyway, I was hoping for some answers as to progression in my legs, but failed to get him to insert the needle anywhere that I have the twitching other than the arch of my right foot. Therefore, so much for learning about that!

I think maybe he's miffed that I went to another facility other than his. But then, as a professional he's bound to be "above" that, right?

Anyway, I'm done. In fact I don't want more tests right away at Hopkins unless they insist. I was just weeping after I got home, and Don said to me, why? nothing has changed, everything is exactly the same as before you went for the test. And I said, but I wanted answers, I wanted to know what to expect. And he pointed out that everyone on this earth would like to know what to expect. and that is very true.

My question to you guys is: is this doctor's repeated insistence that limb involvement being "global" and if any one (of the two) he tested was a-ok, then my diagnosis of probable MND by Hopkins was to be doubted, should I place any hope in that?

Thanks very much, and sorry to be so long winded. :)
 

wright

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I am so very sorry your experience wasn't what you expected . . . and frankly . . . what it should have been. Unfortunately, no matter what we teach the students in medical school about bed-side manner, if it isn't part of who they are, then it simply goes in one ear and out the other.

I'm going to answer your ultimate question honestly but I certainly don't want you to lose hope.

I'm going to have to disagree with his assessment. ALS is a disease that progresses and more or less marches as it does. Certainly there will be a point when all the muscles are going to be denervated, so it will be global at some point. However, in the early stages, that is not the case. There are many studies that have addressed that. He certainly should have EMG'd all four of your limbs and in multiple muscles.

Again, having said all of that, please don't lose hope. There was someone on here that posted yesterday (I think his name is silvermane or something like that) that was initially diagnosed with MND and then his diagnosis changed.

I think you should go back to Hopkins and let them evaluate you. You will be in good hands down there.
 

Al

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I would tend to agree that Hopkins would be a good idea. That other guy sounds like a real jerk. I know it's hard but try to ignore what he says and take it a day at a time.

AL.
 

olly

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rose

i am so sorry you had to go through such an ordeal.
some doctors are so up there own back sides ,they are so full of themselves and detached from all feeling for the patient.
in the begining of the year i went to my first mnd clinic appointment.
the neuro was as i described above and i did not stop crying for a week, i will not go back.
i understand how you feel,sending a big hug.
(((((HUGS))))).
caroline:-D
 

rose

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Thanks,

I appreciate you taking the time to read my dissertation. I am going to do my best to take it one day at a time, and do not plan to ever lose hope. I guess I thought I would get more specific information as to what's happening in my legs ~ like an estimated time line of what to expect, and that is unrealistic.

The trouble with my legs is so new to me, and so unwelcome (obviously) that it was hard that he wouldn't even take the time to listen, or to look at the areas that have the fascis, much less insert the needle there! It is a life style changing event for me, and he couldn't be bothered.

Understandably, I, like anyone else on here, would grasp at anything offered as an alternative to MND, but it wasn't so much like he was trying to give me anything positive, as much as to undermine my confidence in the neurologist at Hopkins by dangling the prospect of the Great Unknown as my choice. I go through that enough on my own, wondering if they could have missed something, if there isn't something else to test for, without what happened yesterday.

thanks again, :)

P.S. Caroline, I just saw that you responded too. Thanks so much. It is awful to have someone be so arrogant! Do you have a different clinic to go to now?
 

lovelily

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Hello Rose....I am so sorry that this happened to you! :( I don't know if you remember me saying that I went to one doctor in NYC, after my biopsy, and told him that my one hand felt weak, and was fumbling in certain situations.

He threw a pencil across the table and told me to pick it up. :-? When I did, he said I was fine. Hmmm. That hand now has atrophy. I did not go back to him.

Perhaps these doctors deal with such sad situations that some 'really' detach themselves, or they could not do what they do. for the patient it looks as though they are being inconsiderate.

I hope you have a better day, today.
 

lostinlouisville

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Rose

I am so sorry, it seems that we who are a little less aggressive, trying not to step on the toes of these "GREAT MINDS AT WORK" come out feeling the way you did. I always go in trying not to offer my opinion and trying not to ask to many questions so that I will not come across like I am the expert on my body"heaven forbid" I act like I know what is going on inside of me. I really hope this won't set you back in your peace of mind, not that you can have much through this. You are really sweet and do not deserve to be treated this way. I think your smart not to go back to him. But go to the clinic, they just may make him feel like the fool he is. I am lifting you up today, so make it a good one.
 

Sammantha

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Hi Rose....................... Your message is not winded and we care about you as much as you care about all of us...........

EMG technicians and neurologist's will only think MND or ALS if they can stick a needle in an clinically unaffected muscle and it shows abnormalities. When i had my EMG's after my abnormal one, they only did the muscles that were normal on the first! And the subsequent EMG's were like that, my last one was suppose to have been done in my tongue or neck, but the tech said to me that hurts a lot and didn't do it. Same old muscles. My techs have always checked me over, brisk reflexes i even had twitching and clonus on my last one. I have to say though the tech was really kind because i did not have insurance at that time and did not charge me very much at all. Stil my neuro said it was fine! I too have constant static in my left arm and lower right leg, it is so loud they have to turn the machine down everytime. I Sooooooooooooooo understand your frustration. When i read about EMG and ALS it does say that you should think of it as a root disease, that the root is bad so all the branches are bad even if they have not turned brown yet. I think they wait until it is that bad before they will diagnose it.

I know what you mean about coming back disappointed, but everyonelse glad that you did not get the diagnosis............. You dont WANT als, but it would be nice to have closure and prepare for what is going to happen to your body. Keep going like you tell me! Don't give up... Hopkins sounds like it is better, but it is hard to get everything in, in one appointment. Good luck and god bless, lots of love Sammantha
 

ZenArcher

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If you are unhappy with the doctor find a new one. I'm not sure where you are in NJ but Hershey Medical Center may be closer. That is the clinic I go to and Dr Simmons takes the time to answer any and all questions.

I wasn't there so I won't comment but the simple fact is if you're not happy go somewhere else. My EMG studies were all started on the side opposite of where my symptoms were and they only moved on once they found problems in both. My symptoms began in my left hand but every insertion in both my right arm and leg sounded like a fire fight.
 

rose

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Thanks again everyone :) You've given me encouragement as well as some specific answers. I know that my neurologist at Hopkins wanted to wait a while before re-running tests, and, in retrospect, she probably knew best.

Jeff and Sammantha, you made interesting observations about EMG findings and may have been what this particular doctor was looking for. ... When I last was down to see my neuro at Hopkins, my limb emg which was done in April was clean. Despite this she still suspected the MND, but felt I was in the early stages. At that time though, my legs did not feel weak and I did not have twitching in them. Perhaps, the unpredictability of progression even applies to how it presents in the the EMG at first.

Regardless, I'm done with the testing, enough is enough for now. I have adjusted to taking the Rilutek, (it made me sick at first) and maybe when I get down for the clinic visit I'll learn that I've qualified to be in a trial study of some sort.

Jeff, I don't think that Hershey is much closer to me than Baltimore, (I'm literally just a few blocks up from the Hudson River in Jersey, so very easterly) but it is good to know that you like the doctors there.

Lovelilly, Yes, we're speaking about the same doctor.

I actually plan to close this thread for more posting. I think it has the potential to grow and grow, and as interesting as it is, I did get my answers as much as I am able to, and I feel badly for those that need to use assist devices, as my first post even to begin with is so very long.

thank you one and all! :)
 
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