It's the oddest thing...

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Loriliz

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I have my EMG tomorrow and I don't know whether to hope everything is fine or not.:-?

Of course I want to not have anything horrible but, because I can't point to a large laceration or broken bone, I feel like a big faker/wuss. I know in my heart that something isn't right, but I can never really be sure my head isn't "noticing" things that I might not have noticed previously that are totally "normal" for me. It really is true that a little knowledge is a dangerous thing.

Being at work has been hell lately. The fatigue, odd gait, etc. has been very hard to explain. "I don't know" just doesn't cut it. Having a brain tumour makes it a little easier *chuckle* Even though I know that, for now, it is okay, when you say "tumour", people freak out and give you a lot of leeway.

I am terrified of going to the EMG, but for the wrong reason. What am I going to do if everything is hunky dory....:confused:

Lori
 

BethU

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I have my EMG tomorrow and I don't know whether to hope everything is fine or not.:-?
I am terrified of going to the EMG, but for the wrong reason. What am I going to do if everything is hunky dory....:confused:Lori

You'll heave a huge sigh of relief, cheer and celebrate (along with all of us here on your behalf :)) ... then when you have recovered and relaxed, you'll make another appointment with the doctor, and say, "OK, where do we go from here to figure out why I am having these distressing symptoms."

Good luck! Fingers crossed for "hunky dory."
BethU
 

Just J

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I have my EMG tomorrow and I don't know whether to hope everything is fine or not.:-?

Of course I want to not have anything horrible but, because I can't point to a large laceration or broken bone, I feel like a big faker/wuss. I know in my heart that something isn't right, but I can never really be sure my head isn't "noticing" things that I might not have noticed previously that are totally "normal" for me. It really is true that a little knowledge is a dangerous thing.

Being at work has been hell lately. The fatigue, odd gait, etc. has been very hard to explain. "I don't know" just doesn't cut it. Having a brain tumour makes it a little easier *chuckle* Even though I know that, for now, it is okay, when you say "tumour", people freak out and give you a lot of leeway.

I am terrified of going to the EMG, but for the wrong reason. What am I going to do if everything is hunky dory....:confused:

Lori



Hi Lori. I understand completely. My husband pesents ALS like symptoms and progressing for 3 yrs and no diagnosed. At this point we would like to have a diagnosed however horrific the truth may be. A diagnosed will allow us to plan an move forward. For now, be happy that you are still able to work. Good luck with your EMG. And as Beth mentioned, we are all here for you.
 

crystalkk

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Lori,

I totally understand, and feel the same way. I have an emg next Friday, and I am pertrified.
Good luck tommorrow.....
 

rose

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We can all relate to wanting a physical, easily accepted cause for our trouble, its just that we also want it to be treatable, and preferably curable! But remember, No matter what your EMG results, it probably won't mean you're done with the diagnostic process one way or the other. you're most likely going to be residing in limbo land for a little while longer, regardless. (sorry)

The public as a whole just does not understand about how long it takes to get a diagnosis - even our families don't understand. You can always pick a fairly well known ailment such as Myasthenia Gravis, and say you're continuing with the diagnostic process, but this is probably what you have. A brain tumor would have a nice dramatic flourish, but alas, too many people would have opinions. Its better to go with something that everyone has heard of, but they are kind of vague as to what it actually is, plus its not interesting sounding enough to ask a lot of questions about. MG should fit the bill :cool:

Back when I had the EMG of my vocal cords last Autumn, I'd never even heard of an EMG when I went in for the test. While sitting in the hallway waiting for my turn, I overheard the neurologist speaking with a woman patient that had gone in before me, telling her that they hadn't found any problems, that physically there was nothing wrong with her vocal cords, and I felt so badly for her! He advised her to go back to her psychiatrist for more sessions.

Then, midways through having the testing done myself, he stopped the process and told my laryngologist (that was in the room performing the test with him) that there was no need to continue on to the NCV. (which she had planned to do as well). So, she talks to me afterward, and explains that all of my muscles that operated the vocal cords were at different stages of denervation and renervation, and I STILL didn't get it! I was kind of relieved they finally found a reason for my vocal cord atrophy ~ that I too wasn't being told that it was all in my head like that poor woman who went in before me. But, even with the EMG findings it wasn't like anyone raised the possibility of any form of MND with me at that time, or for several months following that. There are reasons other than this that are always explored first.

Just look at it as an information gathering step in a larger process, everything doesn't hinge on just this.

Take care, and I hope you get some answers, just don't pin your hopes on getting enough answers, as it leads to disappointment.
 

elliekusa

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Take someone with you...

I just had my EMG yesterday and it was not fun, but not painful. Although my EMG is not technically "clean" I have no denervation which is supposedly good.

It was a huge relief to get it over with and move on to the next step (figuring out what the heck is going on with my body).

Everyone here told me to take someone with me. Did I follow their advice? I thought I would be fine without someone.

TAKE SOMEONE WITH YOU! They can help with questions, write things down and attempt to remember all the things you WILL forget! It is good to have someone there for moral support!

GOOD LUCK!

Ellie
 

BethU

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Lori ... there was a lot of bravado in my first reply (fake bravery is my specialty), but I know exactly how you feel. In an hour, my husband will be seeing a pain specialist and next week a neurologist, and I am hoping against hope that they will tell him he has MS. It sounds awful to hope for that, but he has suffered terrible pain for 30 years and doctors have patted him on the head and rolled their eyes, and everybody we know has just "accepted" that he is in constant pain, but they don't have any idea how difficult it has been for him to live and function like that, and how much guts it has taken for him to get through each day.

When it started 30 years ago, it was with a cluster of symptoms that screamed MS ... according to the neuros at the time ... but they couldn't prove it. Now, suddenly, he has another cluster of symptoms going on that are textbook MS, and I am clinging to the hope that he will finally get a diagnosed, and possibly some treatment. I know that MS is not very treatable, but there are things that can help ... and if he has a name for what's going on, maybe he will finally get sufficient pain med and a little more focus fom our PCP.

It is the loneliest feeling in the world to know that there is something really wrong, to be scared and in distress, but nothing is visible to others, and doctors won't validate it.

Hang in there ... you're not alone, and everybody on this forum understands what you are going through. It is a long process to a diagnosed, as Rose says, but we're all with you.

Blessings,
BethU
 

olly

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hi. i was the same as rose,oblivious about mnd.
after having serial mri's for a number of years to rule out ms and other things i was told it was mnd in nov 07.
i was always 99% sure it was ms,someone mentioned mnd once and i just had a image of stephen hawkings in my head and thought no way is it that and dismissed it.
i hope your emg goes well,i think it could still be early yet for a diagnosed.
take good care.
caroline:-D
 

mtngirl

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Lori,

I can totally relate to how you feel. I just had my second EMG two weeks ago which was deemed completely clean by neuro and I have to say I left the hospital in a COMPLETE daze. I didn't know how to feel. Yes, I was happy that it was clean but I know that something screwed up is happening to my body. What is it? Heck if I know. And it gets old telling people that the doctors just don't know what's wrong with me. It makes me feel like a head-case.

Anyway, hang in there. I hope you get the answers you are looking for and that it doesn't point to ALS! I'll say a prayer and send good vibes your way.

I wish we could wear our symptoms on our skin for everyone to see (sounds weird, I know).

Take care,

Tracy
 

lovelily

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Hi Lori!

Everyone posted such beautiful things to you. I don't think that anything I write, will be better than what has already been said. Just know that I have you in my thoughts and prayers, and I am hoping for the best outcome for you!

God bless you, as you continue your journey for answers!

take care
lovelily
 

brendapals

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Lori,

I will keep you in my prayers for some kind of answer with your EMG.

As far as the hard part of being at work- yeah, I would talk funny, start crying over the silliest things, get exhausted from little work- I just told them all I had been drinking margaritas all day and they finally quit asking!

They knew I hadn't been, but that was enough to "break the ice" when I didn't have a diagnosed.

Keep us posted,
Keep the faith,
brenda
 

Loriliz

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Words fail me...you are all wonderful. Thank you for making me feel less alone.

My son gave me a great big squishy teddy bear for my birthday (yesterday), because he knows that it aggravates the heck out of my husband that I have to sleep "hugging" a pillow. He thought the bear might be less offensive...lol

He told me to take it with me to the hospital so the needles won't hurt.

Family is life
 

MtPockets

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Praying for good results. Just wanted you to know you are not alone.
 

crystalkk

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Loriliz,

Happy Belated Birthday, Your son sounds so sweet.....Please keep us posted about your EMG.
I hoping for normal....I'll be praying.
 

Just J

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We can all relate to wanting a physical, easily accepted cause for our trouble, its just that we also want it to be treatable, and preferably curable! But remember, No matter what your EMG results, it probably won't mean you're done with the diagnostic process one way or the other. you're most likely going to be residing in limbo land for a little while longer, regardless. (sorry)

The public as a whole just does not understand about how long it takes to get a diagnosis - even our families don't understand. You can always pick a fairly well known ailment such as Myasthenia Gravis, and say you're continuing with the diagnostic process, but this is probably what you have. A brain tumor would have a nice dramatic flourish, but alas, too many people would have opinions. Its better to go with something that everyone has heard of, but they are kind of vague as to what it actually is, plus its not interesting sounding enough to ask a lot of questions about. MG should fit the bill :cool:

Back when I had the EMG of my vocal cords last Autumn, I'd never even heard of an EMG when I went in for the test. While sitting in the hallway waiting for my turn, I overheard the neurologist speaking with a woman patient that had gone in before me, telling her that they hadn't found any problems, that physically there was nothing wrong with her vocal cords, and I felt so badly for her! He advised her to go back to her psychiatrist for more sessions.

Then, midways through having the testing done myself, he stopped the process and told my laryngologist (that was in the room performing the test with him) that there was no need to continue on to the NCV. (which she had planned to do as well). So, she talks to me afterward, and explains that all of my muscles that operated the vocal cords were at different stages of denervation and renervation, and I STILL didn't get it! I was kind of relieved they finally found a reason for my vocal cord atrophy ~ that I too wasn't being told that it was all in my head like that poor woman who went in before me. But, even with the EMG findings it wasn't like anyone raised the possibility of any form of MND with me at that time, or for several months following that. There are reasons other than this that are always explored first.

Just look at it as an information gathering step in a larger process, everything doesn't hinge on just this.

Take care, and I hope you get some answers, just don't pin your hopes on getting enough answers, as it leads to disappointment.



Rose, you are so right! We have finally just come to the understanding as to why the diagnosed takes so long. Us, our family, and friends are very frustrated and do not understand the process. We just got it! So now we explain to everyone that my husband is under doctors care and monitoring his progress while ruling out possibilities along the way.

Also, to your point. A clean EMG means nothing. My husband has had two, the last one beaing about 18 months ago and he continues to decline. I am sure they will schedule him for a 3rd in the coming months.
 
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