Neuro Appt Today - finally had an EMG!

[Xina535]

Quick background:
Been twitching since July 2012, only had reflexes checked and a nerve conduction test on my arms since twitching (all normal). Been deathly afraid of getting an EMG because I was not sure how I would handle any piece of a single bit of bad news.

Been having left leg/hip pain, extremely bad at one point, x-ray in April by orthopedic doc showed nothing. Waited until yesterday for an MRI and will get the results this Friday. 2 images on the CD are marked up by the radiologist, what looks like slipped discs or something. ANYWAY, this orthopedic doc referred me to a different neuro for a 2nd opinion on my twitching.

I went there today.

He was super nice, totally understood my fears, he said he's been twitching himself since "way longer than I have" and suggested he do an EMG right then and there to give me some peace of mind! I told him, "Nooooo!!!! I am too scared. I need my family with me and some pills for back-up..." and he reassured me that he seriously believed it would come back clean. I started sweating like crazy as he pricked my left arm and leg (just two spots) and he told me as he was watching and hearing that everything is totally fine. My reflexes are also still all ok. He said not only do I not have ALS, but I don't have any sign of anything else even. Totally healthy. He believes my twitching to be related to perhaps some sort of electrolyte or magnesium or problem with absorbtion of these things, and is triggered/made worse with stress and panic, but this is not anything bad.

I can't believe I did an EMG like totally spontaneous like that! I am so relieved....to no end!!!! I recommend everyone who has not had one out of fear to get one done if you have the possibility. The doc said, "Even if there was something on there, wouldn't you want to know and be treated as soon as possible?" - so that is a really good point to keep in mind!

He said he sees the opposite - people who think they have ALS or dementia come in and then don't have it at all, and those who have never thought they could have ALS or dementia are those who are diagnosed with it, sadly. He said that what is more unfortunate is that many patients with these serious disorders seem to put off going to the doctor and finally when they go, they have already missed some opportuinities to have better quality of life, and in Germany, missed chances to get insurance to pay for the treatments, therapy, etc that they need.

The EMG can't lie, so I see ths as my muscles have spoken and they said, "Hey Xina's Brain, chill out up there, we're doing alright!"

I just have to go to the othopedic on Friday to get the full report from this neuro and from the MRI of my lower back, probably all kinds of pinched nerves, which I can totally deal with and will happily take that news!

[nrwtwitcher]

Congratulations Xina I am so happy for you.

[Xina535]

Congratulations Xina I am so happy for you.

Thank you!!! I do feel very relieved and better about things. I tried replying to your PM but it wouldnt let me, so I wrote you back on Facebook.

[leroyb]

Brilliant news Xina. Thrilled for you

[RGB]

Great news!

... he said he's been twitching himself since "way longer than I have"

... but can someone please find me a neurologist who DOESN'T twitch? It's either a global conspiracy to reassure patients or this is a harmless condition that affects only highly intelligent people like neurologists and me

RGB

[ShawnW]

We just notice it. I would bet everyone twitches to some degree or another. We just analyze the s^*( out of it.

Xina, very happy for you. Time to live again eh?

[Xina535]

Thanks all!!

Yes, I've been living! So weird how like 97% of my twitching has stopped! I probably twitch like a normal person now. I am not going to expect it to stay away, but I am enjoying the stillness while I have it. I still twitch, just way not like before.

One thing has still been haunting me. The fact that EMGs can be done in a non-affected area and be "clean" but the disease is starting in a different spot which was not checked. At least that is what I got from reading posts on here. So I have these carpal tunnel type symptoms in my right hand, and I can't determine really how I feel about it. Is it ok since my EMG on the opposite arm was clean? Is this carpal tunnel or something else?

Just been doing what I can to help it, like heat, rest when I can, wrapping it, etc. most of the time I keep calm about it, but like I said, there is this ghost still lingering around...not ready to stop my anxiety meds just yet!! This needs time to die down after almost 1 year of complete horror and freight!

[Red Raider]

Xina
If you had ALS anywhere in your body and you have been having twitches as long as you have had an EMG would of picked it up anywhere. I've read, my ALS specialist I see in Dallas TX who is ahead of the MDA/ALS clinics for Baylor and UT Southwestern said if you have a drop of ALS let say in your big toe for example and they tested your right hand it would pick it up so please rest easy and tell that ghost to go away. Now this is what my doctor told me and he is one of the best in the country beside places like Mayo, Emory, or Duke you have been going on to long with this I wish I was in your shoes with amount of time I'm only 6 months in and scared to death. I don't wish any of this on anybody keep your head up girl and stay positive and strong.

[Xina535]

I know how you feel. At 6 months I was so so so scared still. I still am (obviously), but it has gotten way better with time and the EMG.

I just do whatever I can to take things not just day by day, but one thing/step at a time.

Thank you for the advice about the EMG! One question: did you mean that they can test in my "left" big toe and right hand and if there was a drop, they would see it?

[Red Raider]

Yes mam if you have ALS anywhere a EMG would pick it up. I mean there is a small percent that it might be negative or the doctor or tech who was doing it didn't know what was he or she was doing if get that with everything though but I was told by the numerous Neuros I've seen if ALS is anywhere in your body it will be seen on an EMG and as long as you have been twitching girl you wouldn't be able to do anything or you would be pretty handicapped by now. I hope I could ease your mind feel free to hit me or PM about anything. My right hand is really bothering me here lately like when I use it I get a burning and very weak feeling feels like my is hard to open and stiff but it tires out quick as well have you ever had that. And is that a part of BFS?

[Xina535]

Thanks for the advice again about the EMG!

Tiring out quickly is common BFS stuff. In the mornings, my hand feels stiff too like I can't open and close it as quick as my left hand, and there is some pain involved in it. I would think this is related to your carpal tunnel.

[Red Raider]

I hope so it's scary as hell. Hit me up anytime ok.
Houston

[jebmd]

Hi Xina,
Congrats on finally getting your EMG-I went through exactly the same fears that got better the day before the EMG when I spoke to the neurologist I was going to be seeing on the phone and she told me right then that she thought it was benign. I had the test anyway on my right arm and leg the next day and all was well. I can't even describe the relief I felt. Of course, a few weeks later, the twitching was all on the left and I insisted on another EMG on the left arm and leg just to be sure. She also said that ALS would be picked up anywhere in the body that was tested even if that was not the area affected by symptoms just as Red Raider said. So you're clear and that's wonderful-time to get back to living!
Cheers,
J

[Xina535]

Thanks so much Jebmd!! It does make me feel better! I posted a new Topic in the Support Folder about my hand with pics, asking for some opinions on atrophy, in case either of you know about that as well. I think after the neuro appt on the 23rd, I will hopefully have more answers and feel much better. I just wish he had looked at my right hand at the first appt when I already had some pain in it, but he just said to come back if it doesn't go away.

[Xina535]

Neuro appt today: he was not concerned about my ugly hands and its holes. He believed I was over analyzing. Normal nerve conduction test in my hand. Result: he thinks it's overused/strained, particularly the thenar. The electrical pulsing can come from inflammation flare ups either from joints or tendons, when the overuse gets worse, and sure, that can cause coordination issues. I need to try to baby it a bit and if the pain/pulsing continues or gets worse, to go to my orthopedic doc for muscular/skeletal treatment, since he ruled out any nerve compression or damage. He also told me to seek out a new therapist, lol!