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Beach61

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Well the waiting for my EMG test was hell.

I had painted a picture in my mind that resulted in an ALS diagnosis. I was shaking while waiting in the doctors office.

The test began with an ECV, this is a very uncomfortable procedure lots of jumping. The test was done on my right leg and my left arm.

Then the EMG which was not as bad. This was done in my legs and arms no torso no tongue.

After the test I asked the Doc on the results. She emphatically stated that this is not ALS and that the results were normal. She did say she had a weak reading on my right foot with the ECV perhaps some kind of neuropathy.

I asked her about the equipment used, she indicated that it was the same as what she uses at Stanford and the UCSF ALS Clinic. I asked her about her experience with ALS She indicated that she works at the Stanford and UCSF clinics and did her fellowship under some ALS renowned Doctor (forgot the name).

I broke into tears and left the office feeling like I was on top of the world.

I have an appointment on Thursday to formally review the results.

That evening however I noticed my voice getting weaker again and after a big dinner my tongue started to feel strange again. When I went to bed I was finding breathing difficult, it wasn't like I had short breaths just a feeling that I was not getting enough air.

The next day I did not feel any better I still fell weak, my tongue feels strange in my mouth,
I got tired at the end of the day, so I called my PCP and he told me to come in.

He congratulated me on the good EMG results and checked me out, he said my breathing was fine, my throat was fine and that the little ridge on the end of my tongue was probably due to me grinding it against my teeth. He saw no need for me to see a Pulmo.

He did start talking about how stress can cause the body to do so many things and that once my Neuro gave me a clean bill of health that we should start to think about psychological help.

Here is my issue, while the EMG looked good how do I know it was complete. why did she not do my tongue or torso? I am losing lots of weight, can that be explained by the stress.
Can stress cause joint popping that seems to be spreading to all limbs. Will I have to have a severe symptom (slurring, loss of function of a limb or clearly visible atrophy to really know for sure).

I really want to feel normal again. What shall I ask the Neuro on my next visit to review the results.

Thanks again for listening.
 

rose

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Beach, you were given the best news. Do you know how many people, and their loved ones would give anything to have this kind of outcome from an EMG!

The more symptoms you research on this and other places found on the internet, the more symptoms you will acquire. .... I just replied to your query over on the PBP forum ~ do yourself and your family a huge favor, and put all of this out of your mind. Seriously, the word "bulbar" shouldn't even be in your vocabulary. Don't waste the time you have now, worrying over something as rare as this, for which you have none of the symptoms of. Life is too short, and too interesting, to squander over fears you allow to be created without any foundation.

Back when I went for the EMG of my vocal cords, first of all, I had no real idea what an EMG was, had never heard of bulbar palsy. I just wanted to find out why I was losing my voice. My doctor had told me that my vocal cords were bowed due to atrophy (which she saw upon exam, so I knew I had atrophy, but did not know why.) Anyway, I was sitting in the hospital corridor, waiting for my appointment, and the neurologist came out in the hall to talk to the patient that had just come out from having it done. He explained to her that there were no abnormalities with her vocal cords, that there was no physical reason at all for her to have the voice problems, and she needed to start going back to her psychiatrist. She nodded in agreement, and left. Beach, I heard this woman talk. - or try to talk. She virtually had NO voice. And it wasn't from a physical cause.

You've got a choice, you can listen to your doctors, who sound like they have excellent credentials, and hear the good people on this forum that have given you every assurance that you don't have any symptom that sounds like a form of motor neuron disease, or, you can decide that you don't care what everyone says, you're going to let your fears ruin your life, and the lives of everyone that you mean something to.

Good luck to you.
 

Zaphoon

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Beach,

Congratulations on your clean EMG. Great news!

As to what you can ask your neuro on the follow-up to get the official results, ask her to speak into the recording device you will have brought with you and explain why it is you do not have ALS. Ask her to give you several reasons on the recording.

Now, once you have her voice on record, telling you why you do not have ALS, play this any time the fear of having it starts to grip you. Let her voice calm your fears over and over and over.

Rose is right when she stated there are an awful lot of people, especially on this forum, that would delight and no doubt the news that you've just been given.

Zaphoon
 

Beach61

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I know what you are saying I am fighting with this same issue.

Do I ignore the symptoms? for example I woke this morning with my whole body numb, my arms feeling weak, my voice is noticeably hoarse and when i lift my finger from the keyboard it shakes.

So I should just try to forget these things and go on with my life until I start falling down, noticeably slurring etc. It is so hard to ignore your body. I will start seeking some psychiatric help.
 

DeeMichelle

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Beach, who says you will start falling down? You have to stop worrying about a debt you may never have to pay! Get psychological help; enjoy your family; lay of this Forum for a bit and lay off Google.

I'm sorry to sound hard, I do not worry about getting ALS at all and my family have the hereditary form so yeh just live your life.

Truly these are good results.
I hope you continue to get good news.
Dee
 

Beach61

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I have been thinking about this as usual trying to plan a strategy for my discussion with the Neuro tomorrow.

I am pretty sure she will say that the results are very encouraging and that things look great, lets follow-up in X number of months and to please come in if my Sx change.

To that I will have several questions the first being was the test complete. I have this question after reading several of the EMG procedures done at hospitals seem to be much more complete.

I will also reiterate my progressing symptoms.

After all of that it seems that I will have two choices, push for another EMG at a hospital or ALS clinic, or just accept he finding and go on with my life until I get better or my Symptoms become obvious.

I know I am a big pain in the A____ but please let me know what you would do.
 

Zaphoon

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Beach,

You have to have the "right" kind of wrong going on with you to be diagnosed with ALS. Bring a recording device with you on your next visit and ask the doctor to record ALL of the reasons she believes you do not have ALS.

Further ask her what you would NEED to be going wrong with you in order to have a diagnosed of ALS.

Play this recording over and over and over until you've memorized it!

One more thing, ask her if a referral to a rheumy is in order. If she says no, please do your best to believe her. You could also ask if she has any idea what may be causing your symptoms.

Just some simple ideas that I hope are taken to heart.

Zaphoon
 
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tmasters

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Hi Beach,

You could also ask whether ALL your symptoms could be anxiety related (in your heart I think you believe they could be though you harbor some doubt), and discuss a referral to a psychiatrist.

-Tom
 

awieleba

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Beach,

well, I have been there and done that! Trust me. Last May when I got a clean emg, I was really happy but fearfull of my sx that kept coming and just could not believe it was not als. Then I had the muscle biospy that was 'kinda' normal. I broke into tears before she could tell me anything because I was sure she would say that it was bad. She told me that it was good news, I felt good for awhile. I questioned and researched, it did not get me anywhere! Then the sx still got worse and you know what I have learned from this site? ALot, but the main thing is that we may not know what is going on. I know you have alot of other things going on, and so do I. I am worse than I was in May with emg and july with biopsy but i am still doing things. IT is heartbreaking when you read of those ones who do get a diagnosed and progress very fast, so please use that as a perspective. If you are still able to do all your stuff then dont put the cart before the horse, ok-did I just say that? My mom says that!

My point is that I got an anti depressent and pray and read alot of spritual books and try to put myself in a heathly place. I have stopped thinking about myself so much and started thinking about others. It helps. I have made myself so busy with the kids and the school, church and family/friends that I dont have the time to worry as much. My body will hurt from all that I do in a day but I dont care,I feel better mentally. Idont want to waste this time with fear and worry, I did that all spring/summer. I have stopped google and researching on this site or any for that matter.I do believe that I have some form of a nuero muscular something going on, but I dont know what. I could go on like this for years or maybe not. I have to trust God.(one of my neuro said to me that I have to trust God's plan for me, and I said I do, but I dont think that we have the same plan!LOL, and can you believe a neuro said that? He said that my spirit is more important then my body and it is true)
I have got use to not playing on my tennis team or working out with my friends at the gym every day and I do book clubs and mothers groups, volunteer, and of course shopping. It was hard to let go of the phyiscal part of myself, it is all that I knew and I do get upset when I see my tennis raquet or hear my friends talking about a new pilates class but I am just happy that I can take care of my family. And, I can mange to still golf, so that is good. I do get scared but I feel that I cant go there anymore untill I cant walk or type or talk. Why borrow tomorrow's problems? Live in today and be thankful that you have this gift of time. OUr life is really just a gift of time, however short or long-a gift.

I just want to help you because I have been there. I use to cry everyday all day and when I looked at my baby girl, I would lose it! I would think of the what ifs and I cant believe I wont be here for my children but I dont know that is true and as of this moment, I am here and I love them. You are here today, living and breathing on your own, so you are ok.....

Peace be with you,

april
 

brendapals

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beach,
Congratulations on your diagnosed of NO ALS!

That's way cool. Now, take a deep breath, enjoy your family, listen to what you're being told.............

Anxiety can cause a lot of problems, and it is treatable,
Good luck tomorrow,
-b
 

CindyM

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Beach- changing your thinking patterns requires a change of habits. It takes time-some say about 3 weeks- to develop a new habit but once learned you go about it on auto-pilot.

You just have to experiment with which habit to work on first and how to change it. Any one of a number of small steps will improve things for you, but I'd suggest only trying one thing for 3 weeks and then go on to the next.

The "small steps" might be getting off the Internet, or learning to re-focus on something else every time you notice one of your symptoms. It will take practice, though.

Note I am not saying that your symptoms are not real. Just that I have found that, contrary to what we have all been taught, sometimes you have to wait for things to develop before they can figure out what is going on. Learning one new habit will help you wait, IMO.
 

Beach61

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Well I just wanted to let all of you who have been a blessing to me know where I am.

I went to my Neuro who confirmed that all was fine and that I had the beginnings of carpal in my left wrist but nothing to worry about.

I asked her why they did not do any testing on my right arm, she correctly stated that I did not complain of any perceived weakness in that arm and that the body is regional.

So I asked her what she thinks I should do.

She was puzzled that I was still concerned about ALS so she indicated that she could give me a referral to the UCSF ALS clinic (one of the best). She said she does not think they will find anything but it may make me feel better.

She also indicated that she was more concerned with my sleeplessness and my anxiety so she gave me a referral to a few Psychiatrists who specialize in Neurology ( I guess thats whats nice about being near Stanford there are so may specialists).

So here is what I decided:

1. Get off the internet, I have done so much research about ALS and it is a disease that can be tied to almost anything that ails you. I am so self aware that whenever something happens to me body I go back to the board to see if anyone else had this. This creates more stress and the cycle never breaks.

2. I will not go to the ALS clinic I will follow-up with my Neuro in a month and hopefully continue to improve.

3. I will work on my body, I am walking in the morning and lifting in the evening. My thinking is that If I can continue to do this than I am strong and that should help my mentall frame of mind.

4. I will start seeing a psychiatrist. The way this hole thing developed with me is not typical of ALS, If i had not been in Mexico with my computer wondering what was wrong with me I probably would not have gone so far to the extreme. So something happened to get me to the messed-up place I am in. I probably should get to the root of it.


Now with that said it is not easy, I had a bad flare yesterday where I noticed a ridge on my tongue and that my tongue felt strange in my mouth. I went around staring at my tongue all day, I swore I had fasics in my tongue ( although no one else could see) I kept asking people if I was slurring, they looked at me like I was looney. needless to say I had a sleepless night. I get fasics, not a lot but i get them, when they are on the limbs that were tested I am not concerned but if it is in an area that was not tested than I go crazy.

I also seem to have a cough after I eat, If this continues than I will get that checked as I do not think this is anxiety.



I also keep looking at my muscles to see if there is atrophy etc.

I am hoping that with help of my Family and friends I will kick this.

Thanks all, I will be praying for all of you.

Beach
 

northerngirl

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Beeeeeeaaach,.... I hope your not back here today! You have the right idea get off the computer. The tongue thing, Yep stress, probable grinding your teeth at night, need something to google, try TMJ. Does amazingly bad things! I had a neuro tell me, if you can whistle and stick your cheek out with you tongue on each side its normal. Yes, you will be now walking around trying to whistle the next couple of day, hey just don't do it's a small world after all. oops! I should not have said that.

Cheers, and find happiness today
 
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