View Full Version : Tomorrow is the Big Day
vantec
02-25-2007, 02:05 PM
I am going to see a new Neurologist tomorrow, and hope that he can give me a diagnosis. I'm totally exhausted seeing all these doctors and Neurologists, and never getting a dx. Right now my voice is very weak, my tongue is twitching like crazy, and no matter how much I drink, my mouth is dry, and my saliva is thick. I'm twitching all over my body (yesterday I could see and feel on the right side of my back, looking in the mirror, one of the muscles twitched for about 10 minutes, and I wasn't sure it was going to stop). Thankfully it did, because I would have had a very hard time sleeping if it didn't.
My whole body is so weak now, it is very hard to walk. I finally stopped driving my car, because it would be too dangerous, so I am having my family drive me there.
I have a question for anyone that was diagnoseed with ALS. What did you say to your Neurologist, that made him believe you had all your symptoms? I have a feeling that if I say the wrong thing, he will dismiss that I have ALS, just like the other doctors. I'm surprisingly calm, but I am terribly frustrated.
Conrad
Hi Conrad,
As you know, I have not been diagnosed and I know you wanted to hear from someone who has been. But, remember my post from my appt. Thursday? The neuro came in the room, sat down and asked what it was I was worried about. He kind of badgered me. He kept asking it and I kept telling some of my worst symptoms. He didn't even care about the symptoms he wanted to hear me say MND, ALS or some other deadly disease so he could poke fun at and laugh at me (my family member finally blurted it out to stop the badgering, I wasn't going to go there). There was a member on this forum who said she knew she had ALS, but didn't mention it to the neuro because she felt it was his job to figure out. I don't know the best way, I think it depends on the personality of the neuro, but she may have a point--to simply present your worst symptoms, not a lot and point him in the direction of your fears.
I wish you the best and will be thinking about you tomorrow. Please let us know how it goes. By the way, where is it your are going, neurology clinic, als clinic? Leslie
Hi Conrad,
Just wondering how you made out at the doctor today. I am hoping for the best . Let us know. Leslie
vantec
02-27-2007, 01:14 PM
Hi Leslie,
Sorry I didn't post sooner, but I had a very bad day. And thanks for your concern for me. I could hardly sleep the night before seeing the Neurologist, and after I got back home, I fell asleep in my chair, and woke up with a nightmare.
I could barely walk to his office, but the nurse was nice enough to ask me if she could open the door for me. This doctor seems like he was concerned, which is good, because all the other doctors I have seen, just blame my problems on anything but a neurology problem.
He had me stand with my eyes closed, and I fell, and he had to catch me. Then he had me walk (with my shoes and socks off), and he could see how difficult it was for me. Then he had me walk one foot after the other foot in a straight line, and I kept falling and had to hold myself up on the walls. He had me do it faster, but I almost fell forward. He could tell my voice is nasal, and I was twitching, but he didn't look for it. I did write down on the admittance papers that I had twitching, so he does know about it. He wrote down on his report, that I had progressive stiffness, gait ataxia, and dysphagic. He mentioned ALS, but didn't say I had it, or not. I told him about my cramps, but he didn't want to prescribe anything for them, which was a disappointment. He asked me if I was depressed, and I didn't know how to answer. I finally said that I was, but I have lived with this long enough that I don't let it get me down too much anymore. He also asked me if I would hurt myself, which I thought was strange, and I said no, never. Lastly, he did the standard finger to nose touch, had me stick my tongue out (and it was really twitching), checked my neck, arm, and leg strength, and my reflexes.
They are going to do a brain MRI, and a EMG test, in a week. I was hoping they could do it that day. They took blood for three tests, but the only one I knew about was my CK levels, which I still think doesn't tell you much. I sure hope I get a DX next week, whatever it may be. But I can't see it being anything but ALS, because I have profound muscle weakness (at only 8 months), fasciculations all over my body, cramps, trouble speaking, eating, and swallowing, and my reflexes are hyperactivity.
It went to a neurology clinic, not an ALS clinic. But the hospital is a good one, with a highly rated neurology clinic. I have a question, I hope someone can answer. My first EMG was clean, but that was 4 months ago, and I don't remember having fasciculations at that time. If you have fasciculations, will the EMG test always show that something is wrong?
Conrad
DavidGL
02-27-2007, 01:50 PM
If you have fasciculations, will the EMG test always show that something is wrong?
Conrad
No. The EMG is going to send electricity through your lower motor neurons. It will determine if the signals are getting to the muscles. If they are sending the signals, it says there is nothing wrong with your lower motor neurons (that can be detected). If you are having fasciculations at the time, they *will* show up on the EMG, but they will not show that anything is wrong. Anyone can have fasciculations at any time for any number of reasons.
I know you won't want to hear this, but the doctor asked you the questions about depression because the nature of your balance problems were not consistent with other clinical signs he was looking for. He is doing the EMGs as a precaution.
If you get a clean EMG, it will be time for you to stop convincing yourself that you have ALS. Then go into wait mode to see if things get worse. You may very well end up where so many of us end up--in limbo. Some of us learn to live with it, enjoying every minute of being able to be useful to ourselves and society, some of us make things worse by becoming morose and putting ourselves in a wheelchair long before we need to. Soon you may get the chance to make that decision for yourself. Good luck to you!
DavidGL
Jamiet
02-27-2007, 02:05 PM
David,
Good post, but on the EMG part...my friend had 5 EMG's before she was diag. All normal except the last one. Just goes to show how crazy neuro problems are.
But, Vantec, if you have the problems you say you are having, then something will show up on that EMG. Make sure they test at least 4 limbs, and 2- 4 spots on each limb. That is your chance. make sure you tell the EMG guy what you want.
And DON'T LET THEM DO THE EMG WITHOUT TESTING YOUR TONGUE
Write it down, whatever you have to do to remind the EMG'er, make sure they test your tongue!!!!!!! If an EMG of the tongue is Abnormal.....it' almost certainly confirms an ALS diag.
Good Luck and hang in there.
Rgds,
Jamie
Hi Conrad,
Well I am glad that you had a concerned doc. and that you are having an EMG so quickly. The neuro told me, like David said, that he will look for fascics on the EMG. I don't know why, since they don't tell much. You know that when docs aren't sure of what's going on they always go toward stress/anxiety/depression. That really upsets me because most of us have anxiety and/or depression because of our symptoms. I know my symptoms came first. I have always been a very independent and energetic person and life has changed quite a bit in the last 15 months. So, don't let the doc runaway with that diagnosis. I also don't understand why the docs don't offer anything to the patient's who complain of twitching and cramping. I have read there are meds for both and I also complained to my doc about them. I told him I couldn't sleep well because of them and I didn't get anything either. I wish I had asked. Maybe you could send him an email, that's what I am considering doing.
Don't despair, there are so many illnesses that it could be. I went for aqua therapy today and the physical therapist gave me the most intense neuro exam I have ever had. He ended by saying he thinks I am having neurological problems based on a metabolic disorder. You could have the same good news. Do some more research before you give into a diagnosis of ALS. I wish you all the best with your EMG. Please let us know how it goes. Leslie
bogey
02-27-2007, 02:41 PM
conrad- my friend darrel has been living with als dx over 13 years was at als clinic talking to his doctor about muscle twiting, his doc said forever 100 people with twitching less than 1 has als and twitching all over is better than being in concentrated area,go figure sounds like muscle twitching in a lot of people
Even if you are anxious or depressed because of your medical condition, that doesn't mean the anxiety or depression shouldn't be treated. And just because your doctor asked about these things doesn't necessarily mean the doctor doesn't believe your medical concerns.
Liz
vantec
02-27-2007, 03:56 PM
David,
You say that the EMG will determine if the signals are getting to the muscles. Do you have any idea how bad your muscles have to be, before the EMG will show that there is something wrong? I mean, do you have to be in such bad shape, that you can't walk? Would not a person in early stage ALS have balance problems, because their legs are so weak? I'm not trying to convincing myself that I have ALS, I'm trying to get a dx. So, what you are saying, is that my symptoms are all in my head? How many doctors do I have to see, before I will get a diagnosis?
As far as being useful, I still run a company, limited by my symptoms, which means I can only use the computer, and use the phone, which is getting more and more difficult, because I am losing my voice. I try everyday to enjoy life as much as I can, but it sure isn't easy.
May I ask, are you still in limbo? Or have you been diagnosis?
Conrad
DavidGL
02-27-2007, 04:57 PM
David,
You say that the EMG will determine if the signals are getting to the muscles. Do you have any idea how bad your muscles have to be, before the EMG will show that there is something wrong? I mean, do you have to be in such bad shape, that you can't walk? Would not a person in early stage ALS have balance problems, because their legs are so weak? I'm not trying to convincing myself that I have ALS, I'm trying to get a dx. So, what you are saying, is that my symptoms are all in my head? How many doctors do I have to see, before I will get a diagnosis?
As far as being useful, I still run a company, limited by my symptoms, which means I can only use the computer, and use the phone, which is getting more and more difficult, because I am losing my voice. I try everyday to enjoy life as much as I can, but it sure isn't easy.
May I ask, are you still in limbo? Or have you been diagnosis?
Conrad
I started with hoarse voice two years ago. Atrophy in vocal cords found just about one year ago. First EMG in June. Latest in December. Both good readings. My neurologist is Dr Heiman-Patterson (you can google her) and I like her very much. She tells me that she "suspects" MND but there is not enough yet to allow a diagnosis. She has put aside some of my spinal fluid for her research work. She says, given the apparent rate of progression, that if I do have MND it will likely be a very slowly progressing variant.
So the short answer is yes--I am in limbo. Or as the doc puts it...I am in never-never land.
As I understand it, the EMGs can be tricky. Since it is testing the nerves and they exist in bundles, it is hit-or-miss when they put the needle in your muscle. They could hit a part of the muscle that is not getting a signal even if you are not really showing much in the way of weakness. However, if you are showing significant weakness (like you can't push the doc's arm with your legs) it means that much much more of your muscle tissue is affected--and the probablility of sticking a needle in a "bad" spot goes up. I think this is why it can take many EMGs before you get a reading. And that is why the neuros wait quite some time before doing another--they are waiting to see if more of the muscle is missing signals.
DavidGL
DavidGL
02-27-2007, 05:03 PM
David,
Would not a person in early stage ALS have balance problems, because their legs are so weak?
Conrad
Oh...I had meant to offer reflections on this, as well. I have some balance problems (along with extreme stiffness) in my legs. I did not even know this until the doc did the close your eyes and stand trick...and the walk a straight line test. I do not fall down but I wobble. She noticed this and said "upper motor neuron" involvement. Unfortunately, the UMN does *not* show up on the EMG as they would have to stick the needles in your brain stem. In my case, PLS may very well be the culprit since that is only UMN. But it does not account for the palsy in my throat.
DavidGL
vantec
02-28-2007, 01:16 AM
Jamie,
It is getting late, and I have to go to bed, so I can only answer back to one person, but I wanted to thank you Jamie, for your excellent recommendations on what I should have the EMG person do, so maybe I will get a better chance at a diagnosis. How do they test the tongue? It sounds like it would really hurt.
Thanks everybody for your replies. I will try and write more tomorrow.
Conrad
DavidGL
02-28-2007, 08:30 AM
Jamie,
It is getting late, and I have to go to bed, so I can only answer back to one person, but I wanted to thank you Jamie, for your excellent recommendations on what I should have the EMG person do, so maybe I will get a better chance at a diagnosis. How do they test the tongue? It sounds like it would really hurt.
Thanks everybody for your replies. I will try and write more tomorrow.
Conrad
The standard method is push it up through your throat from under your chin. The neurologists I visit prefer to do it directly into the tongue. It is nowhere near as bad as it sounds. Just don't move your tongue while the needle is in. I
anna1980
02-28-2007, 12:37 PM
I had tongue EMG, the doc put the needle into the both sides of my tongue.It was clear, but I have weakness in back of my tongue.My tongue is flat and some kind "soft" there.Is it possible that EMG was made into the wrong places of my tongue?And I feel weakness and shortness of tongue, should EMG be abnormal?What do you think?
vantec
02-28-2007, 12:58 PM
Hi Leslie,
I can tell you without any doubt, that stress, anxiety or depression is not causing any of my symptoms. I'm like you, the symptoms came first, and then I of course felt depressed about it, but I have come to accept it, what else can I do? I think that doctors feel that before they will give you medications, that you have to have a final dx, which is too bad, because I am suffering physically. My Neuro does not have a listed e-mail, and you can't get him on the phone, you can only speak to the secretaries.
I'm too weak at this point for aqua therapy, unless someone could take me there, because I can't drive anymore. I've done all the research I can, over the last 8 months, and I was hoping I had either Wilson's disease, or Myasthenia Gravis, but with Wilson's, my liver checked fine, and with Myasthenia Gravis, my reflexes were too active.
Thanks and I will keep you up to date when I get my EMG.
Conrad
DavidGL
02-28-2007, 01:04 PM
I had tongue EMG, the doc put the needle into the both sides of my tongue.It was clear, but I have weakness in back of my tongue.My tongue is flat and some kind "soft" there.Is it possible that EMG was made into the wrong places of my tongue?And I feel weakness and shortness of tongue, should EMG be abnormal?What do you think?
Anna,
I suggest that you not try to second-guess the results. Sure, it is possible that it missed a bad signal, but with two probes in such a small muscle it does not seem likely. In order to be diagnosed with ALS you will need to have enough mis-fires to show on the EMG. Your neurologist will decide when the time is right to try again, assuming your symptoms continue.
Suppose that you were to break your arm and it is in a cast for a long time. When it is removed, you would need to have physical therapy to regain the strength you once had. If you were to have an EMG test on the arm, it would not show anything at all, even though your arm muscle is weak. This is because the weakness is in the muscle itself, *not* caused by a malfunctioning nervous system.
DavidGL
vantec
02-28-2007, 01:06 PM
conrad- my friend darrel has been living with als dx over 13 years was at als clinic talking to his doctor about muscle twiting, his doc said forever 100 people with twitching less than 1 has als and twitching all over is better than being in concentrated area, go figure sounds like muscle twitching in a lot of people
Hi Bogey,
I'm sure that is right, because on the Cleveland Clinic Neurology board, I am absolutely amazed how many people have twitching, and I bet that that 99.99% of them don't have ALS.
Conrad
DavidGL
02-28-2007, 01:12 PM
I can tell you without any doubt, that stress, anxiety or depression is not causing any of my symptoms.
Conrad
Don't take this the wrong way, Conrad, but that is exactly what so many people say when they are proven to have physical problems caused by those things.
Maybe you should let your doctor presribe an anti-anxiety medication just to see. Can't hurt. Might even feel good. At least you could put it in your bag of things-tried and make the doctors happy.
Personally, I like to have a pint of Victory Brewing Hop Devil IPA every day to ensure the lack of depression. And on Friday nights...a glass of Chivas on ice. Al's favorite remedy (red wine) makes for a pretty good glow too--but I reserve that for beef stew or spaghetti dinner nights.
Cheers to you and all!
DavidGL
vantec
02-28-2007, 01:16 PM
Hi Liz,
That is what I feel too, why shouldn't the doctors treat me for my depression, and the painful cramps? I think this last doctor did believe my medical concerns, but wants to do the MRI and EMG, before he takes any action.
Conrad
Now that you mention the Chivas and good wine, I have been meaning to ask if anyone has ever heard of this one - since my symptoms started, which seemed to be all of a sudden, I haven't been able to tolerate any alcohol whatsoever. I used to have a drink almost every night with dinner. Now, about an hour after consuming even a very small amount of alcohol, my heart rate goes up and is pounding and I feel very uncomfortable. My PCP said that when alcohol metabolizes it can have a caffeine effect, but I wonder why all of a sudden this has happened. It's like adding insult to injury! Leslie
Hi Leslie just a guess here but I'd suspect something metabolic with a sudden alcohol intolerance.
AL.
Al,
It's funny you say that because when I met my physical therapist for the first time yesterday that was the first thing that came to his mind. Someone on the forum also mentioned my symptoms sounded that way. I didn't know metabolic disorders could cause neurological symptoms and now I have to find out how to check out that path. The docs have looked at me like I had two heads when I mention the alcohol thing to them, but to me it was always a "clue" to what maybe going on. Thanks for your thoughts. Leslie
vantec
02-28-2007, 01:43 PM
I started with hoarse voice two years ago. Atrophy in vocal cords found just about one year ago. First EMG in June. Latest in December. Both good readings. My neurologist is Dr Heiman-Patterson (you can google her) and I like her very much. She tells me that she "suspects" MND but there is not enough yet to allow a diagnosis. She has put aside some of my spinal fluid for her research work. She says, given the apparent rate of progression, that if I do have MND it will likely be a very slowly progressing variant.
So the short answer is yes--I am in limbo. Or as the doc puts it...I am in never-never land.
As I understand it, the EMGs can be tricky. Since it is testing the nerves and they exist in bundles, it is hit-or-miss when they put the needle in your muscle. They could hit a part of the muscle that is not getting a signal even if you are not really showing much in the way of weakness. However, if you are showing significant weakness (like you can't push the doc's arm with your legs) it means that much much more of your muscle tissue is affected--and the probablility of sticking a needle in a "bad" spot goes up. I think this is why it can take many EMGs before you get a reading. And that is why the neuros wait quite some time before doing another--they are waiting to see if more of the muscle is missing signals.
DavidGL
Hi David,
You are in very good hands. I would be thankful that if you do have a MND, that it is a very slow progressing one. I have a friend that has ALS, and he has had it for over 10 years, and can still walk, but has to use two hands to bring a spoon or fork to his mouth. He took advantage of how slow it progressed, and he took a lot of vacations, and traveled, with a live in friend, that he pays, as my friend John has a lot of money.
About the EMGs. The doctors show me the results, and said I was fine. There were numbers like 7.2, 4.3, etc., which I did not understand. What I wonder, is if my second EMG has different values (that would indicate a possible problem), would this help the doctor to make a
diagnosis? Do you have to be so weak that you couldn't push the doctors arm with your legs, to get a meaningful EMG? I beginning to wonder if a EMG is useful, unless you are unable to get out of bed.
Conrad
vantec
02-28-2007, 01:57 PM
The standard method is push it up through your throat from under your chin. The neurologists I visit prefer to do it directly into the tongue. It is nowhere near as bad as it sounds. Just don't move your tongue while the needle is in. I
David,
Well, that is good to know. It might be hard not to move my tongue while they are testing me, because it really has a lot of fasciculation's. I can almost keep it from moving, if I try real hard. Can the doctor hold your tongue, so it doesn't move during the test?
Hi guys. When they did mine I think the doc held onto it while poking it. He did it on both sides. My doc checked my tongue for fasciculations yesterday and said that there were none. He also said the proper way was to have the tongue in the mouth resting at the bottom. He then had me stick it out and wiggle from side to side quickly and then push against my cheek with it while he pushed it from the outside. This checks for weakness. Hope this helps.
AL.
anna1980
02-28-2007, 03:19 PM
Al is right I had the same way of EMG.It is hard to have your tongue in rest with needle in it.The best way it is to lay down, close your mouth and relax.Hard to do it anyway.
CindyM
02-28-2007, 04:02 PM
Hi Leslie- I also have an alcohol intolerence. Not all the time but last Saturday I was seeing double after a half a glass of merlot. I literally had to hold one eye shut to see the television. I did a search and found that some PALS have experienced double vision. Probably the alcohol makes our muscles just relaxed enough to aggravate the symptoms.
Cindy
emjoi
02-28-2007, 05:03 PM
I think I am going to have to leave this forum for a while.
I have the odd muscle twitch, the occasional eye twitch. Sometimes I have a bit of saliva that needs to be spat out. All these little things that are possible signs of ALS/MND. But then I've had these little tweaks for, well, decades.
Since observing my Dad, I've been also observing myself... could I have it too? Have it right now? The idea has sort of infected me. And coming here, I keep finding new little signs to look out for, which is NOT a good thing. It just fuels the paranoia.
So... the best diagnosis is to just wait a year or so. If I've got it, it will be obvious then. If not, then life goes on, good fine great.
You are all excellent people, and especially those of you with ALS, I wish you all the best.
But I have to walk away for a bit.
Thank you emjoi for all your contributions and the best of luck to you. Please let us know how you are doing occasionally.
AL.
Emjoi -
I have truly appreciated all that you shared with us and wish you the best. It makes sense to me too that you take a break and get some perspective. Warmest regards...
Liz
CindyM
03-01-2007, 09:56 AM
Best wishes Emjoi. If you need help with your Dad's condition we are always here for you. CIndy
