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vantec

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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 diagnosed. 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
 

ltr

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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
 

ltr

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How'd it go?

Hi Conrad,

Just wondering how you made out at the doctor today. I am hoping for the best . Let us know. Leslie
 

vantec

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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

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vantec said:
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
 

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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
 

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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
 

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conrad- my friend darrel has been living with als diagnosed 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
 

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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

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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 diagnosed. 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
 

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vantec said:
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 diagnosed. 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

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vantec said:
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

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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
 

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vantec said:
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
 

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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?
 
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