April 28, 2022 at 12:46 am #21854AndrewParticipant
I have been experiencing some symptoms for the past 9 months which have been concerning to me. I have met with a neurologist and had an MRI and some blood work done which did not find anything conclusive. My symptoms have been wide spread twitching, tremors, shakiness, feelings of weakness and joint pain. Some sharp pains have also popped up which seems to come and go. I have also developed a lumpy feeling on the right side of my throat, which has sometimes affected my voice and the amount of mucus I feel in my throat. My breathing also seems to have been affected and there is a sort of hiccup I have developed when I inhale in a certain way. There are many more symptoms that I could tell, but I am really writing this message because I have my 1st EMG tomorrow and I am terrified about what the results might be. I have heard/read many things about EMGs but I don’t know the first thing about them. I know that that it is a long and sometimes frustrating process for diagnosis and it is just scary. Being 31 years old, it has been difficult for me to process these worries especially with some recent life changes. It has also been hard sharing this worry with loved ones and I’m not really sure what to think or how to feel about any of this. I know that I may be rambling in this post or getting things off my chest, but other than my doctors and loved ones I do not know where else to turn. I hope that you are all doing well and I will keep you updated about how this EMG goes.
April 28, 2022 at 2:23 pm #21860Guy CastonguayParticipant
Sorry to hear of your difficulties. I went thru the testing process with little to no pain. Biggest was my worry of the diagnosis because it took quite a few days-weeks to eliminate what it wasn’t. However we got thru it with an ALS confirmed diagnosis and a 2 to 5 year longevity factor. Why worst symptom is the phlem my saliva gland produces and I’m experiencing tiredness.
- An awful disease that I feel rips your body functions apart a piecue at a time.
So the tests are not the worse. It’s the diagnosis because there is no cure and this thing is terminal.
April 28, 2022 at 3:56 pm #21861Sherri MorehouseParticipant
Hi Andy, I wanted to share that our ALS Clinic neurologist did not arrive at a definite ALS diagnosis after the EMG. She actually performed the second one my husband had. EMG #1 was a local neurologist who said the results could not eliminate a neural muscular disease. He then recommended we see an ALS specialized neurologist. Her comment after she performed an EMG was that the results suggested ALS was a possible diagnosis and then she ordered up 4 MRI’s, and a bunch of blood work. After this, she gave the ALS diagnosis. Then we did a repeat of everything at the Mayo Clinic for a second opinion (EMG #3) where they too arrived at a 90% likelihood of ALS.
My point: you may not get a final diagnosis after your first EMG. More testing may be required before they do it. Definitely you should go to an ALS clinic if you are not already engaged. And I would recommend a second opinion as it is not a straight forward diagnosis to make, and some miss identifying a mimic’er. I’d confirm your blood work includes a test for Lyme Dieases and heavy metals if your neurologist has not yet recommended this.
April 28, 2022 at 5:22 pm #21863Louis SavareseParticipant
The tests aren’t bad at all. I’ve had three EMG’s with no issues. My diagnosis was confirmed in Sept of 2020 by a one hour MRI at Cornell. At that time the MRI showed possible UMN disease. (Bulbar Palsy)
I did have symptoms in terms of speech since Dec of 2019 and I went through many specialists in different fields before my diagnosis. My progression has been slow but sure thus far with weakness in my hands, cramping, difficulty speaking with pain in my lower back and neck.
I believe you said you were 31. Please never, ever give up hope.. There might be a host of reasons you are experiencing your symptoms.
Let me tell you a story. I was in my late twenties and my lymph glands got infected and inflamed. I was convinced that I had lymphoma. My symptoms were real but the lymphoma was not. Never let tomorrow stop you from breathing the fresh air today.
We people with ALS today are in a much better place than we were even a few years ago. We have multiple dedicated teams of scientist and researchers all studying commonalities and nuances of this affliction. What’s better yet is that the studies are being done simultaneously which wasn’t done in the past.
Andy, you’re on my prayer list :))
The Sun Always Shines Behind the Clouds
April 29, 2022 at 1:15 am #21865AndrewParticipant
Thank you all for the kind words and advice, I am truly moved by the support. It was a definitely a different experience and anxiety provoking. The EMG came back with no issues. My neurologist was very attentive and gently explained things to me, which I appreciated. I think it is good idea to ask about other tests and blood work as has been suggested. Bless you all.
May 3, 2022 at 6:40 pm #21892KarenMParticipant
Synapticure is your first place to contact. They will give you the right information.
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