EMG question..
 

I was just wondering how may times they "poke" you for an EMG.

many, many times
 

I don't know the exact number, but it was quite a few! It wasn't was painful as I thought it would be, though it did sting a little bit:(.

The whole process takes about an hour. Before you know it, it will be over and you'll be one step closer to a diagnosis and proper meds!

Hang in there!:D
Erin

I have to say, it depends... Sometimes they find the spot right away, sometimes they do not. I have had 2, and an SFEMG.
They do use a small needle. The needle to me is not the worst part but the shocks is what I hate.
I get another one on Thursday. Ugh.
I hope yours goes well, Kristy.

Hello Rumpled!
 

Hey girl! When you get your results and have some time, please let me know how you are!

Hang in there! I miss hearing from you!

:hug:Erin:hug:

Hello Kristy!
 

Hey Kristy!

When do you go in for testing? I know this might be a scary time for you, but try and hang in there!

Hopefully you'll get your results quickly and start in the right meds........I know for me they've made all the difference in the world. Before them, I wasn't even able to swallow and now I feel GREAT most days:D.........

You may hear a lot about steroids (and they are a necessary evil )but they do help most people.............

Hang in there!
Erin:D

I had the EMG...
It was normal so the doc is saying I do not have MG but.. he also says I do not have any neuro-muscular disease at all which I find frankly... strange.
I cannot lift a gallon of milk. I choke. I can hardly chew anymore. I have problems standing.
He says I need to look at other diseases. I am left in limbo.

Oh, Rumpled, I am so sorry!
 

Jen,

I am so sorry! What on earth do they THINK you might have? How can they say you don't have a neuro-muscular disease? I just don't understand!

How long have you had these symptoms? How are you doing? Stupid question, I know..............

I just don't know what to say! I am so sorry for you!

You are in my thoughts and prayers!

I am going to ask my friends/family to pray for you!

Try and hang in there!

:hug:Erin:hug:

Rumpled
 

If you want to talk, vent, whatever, email me @ my hotmail address!!!!!

:hug:Erin:hug:

Oh Rumpled,

how very frustrating for you, I hope they sort it out really soon for you
take care!! and keep talking to us, I know it helps me talking to all of you.
redtail

Oh, I was not given an alternative diagnosis - just that it is not MG or anything neuro-mucular. Well, great. But tell me, if not MG, not anything muscular - then why can't I chew?
This all started in 2005. Shortly after my adrenals came out - my own source of steroids.
He even told me I don't need to see him again. Which is fine. I don't need to see him.
I just don't know of other diseases that have these same symptoms. And why the other doctors (and expert and neuro) think I do have a neuro-muscular disease. I had IVIG. So, WTF? Whatever... I will see my doctor, see what he thinks. But this yahoo sent letters to everyone telling them I am fine. Pfffttt.

Hi Rumpled,

sounds a bit weird that that one dr doesn't think you have a nm disease while the others do. Excuse my ignorance, but not having had a emg, does this PROVE you don't have MG, I may have to to a bit of searching.
Have just looked at a couple of sights and found that in rare cases people can have MG, but the tests come back negative for it??!! Did he mention anything like this(or am I just reading what I want into it?)

I really hope your Dr can help you out.

I wish I could be of more help, if you need to talk, send me a pm.
take care
redtail

Sorry for the delayed reply... I have been away visiting relatives (I am tired but it is nice to see my uncle).
I have had 3 other doctors think I have something nm, not sure if it is MG or not. For this doc to say it is all not NM or MG is just plain... strange.
I know all my antibody tests are negative. I do not meet all the criteria for MG...but then again, this disease seems to be different in everyone but I also did not respond to the treatments so far.
I was looking for an intelligent assessment... I did not get that. Thank you for your support - both of you.

Rumpled ~

That must be really frustrating! I hope your Doctors figure out what the problem is soon. We are all here for you if you need to vent :)

Kristy

Hello Rumpled!
 

So these "brilliant" docs still have no idea what's going on?

What the hell? How can they "rule out" MG and then send you on your way when you are sick? I just don't get it!:mad:

I just don't know what to say.............I can't even imagine how frsutrated you are right now.

Do they have ANY idea what you have? Anything @ all?

Please let me know if there is anything I can do or say to help.........

:hug:Erin:hug:

The guy said to look at another disease... but in googling, I cannot find another reason for choking or swallowing issues that is not muscular... I don't get it.
And now... I have shingles... so feeling rather... awful. What next!

Wow. I don't have any idea of your history or anything. I can only imagine the frustration you're going through. I do know the most frustrating thing for me and my wife was the "not knowing what was going on" stage. Google-ing on your own for symptoms, self-diagnosis, is just a recipe for worry and frustration. My symptoms all pointed to a very nasty cancer with a short life expectancy and didn't mention MG at all with online resources. Until I was diagnosed by my thoracic surgeon I had no idea MG even existed.

Have you had full upper body CAT scans with the contrasting dye injected, MRI, PET scans etc? Have you seen an esophageal expert? Has your primary doctor sent your EMG test results for another opinion?

I hope all works out well for you and you find out what is happening to you soon.

Brian

My CT for the thymus was without contrast so no... some of the abdomen with contrast (I have tons of inflammed lymph nodes there - but I am assured it means nothing - just like they do from my neck to my knees).
No PET scans... I have have tons of MRIs but not lately of the abdomen. Of the head, yes - due to the pit tumor.
I have to find yet another EMG guy... no esophageal guy (they exist! what are they called?)...
My primary care guy is so baffled by me that he ... well, he also gives me less than one minute. I have been searching for someone else that I can actually see that will help and not just give me pain pills (which if I wanted, I would be happy... but I am not).

I have already had one rare, potentially fatal disease. I am so beyond this at this point. My endo even told me I cannot have another rare disease. Like I choose this?

I'm not sure what esophageal specialists are called to be honest (possibly Gastroenterologist?), I was scheduled to meet with our local one when we were first trying to figure out what was going on with me and they just called him the esophageal specialist when talking to me about him. If your primary care guy is not looking after you, I think you're right to be looking for a new one. That's really hard to do where I live, good luck with that.

Heh... When I was given my diagnosis, my wife and I both declared "much better than the alternatives, I choose this one" :D Of course, I'd prefer not to have any health issues.

I have a gastro guy and an ENT so maybe I will give them a call... I am just so tired of seeing doctors at this point.
I have a couple of recommendations for PCPs so I will search them out, poor things.
I too, would prefer health. I thought after my adrenals were out that all I would have to do is manage that... no idea I had another hidden disease. Off for the medical mystery tour...

Best of luck; I hope you find your answers soon.

Hello Rumpled!
 

:hug:Just wanted to let you know that I am thinking about you and praying for you!

You are truly brave! I am so sorry you are having to go through this! I wish there was something I could do or say to help, but I know there isn't.

Any time you want to talk, I am HERE for you!!!

:hug::hug:Erin:hug::hug: