Annmarie

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captwilly

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You need to see a specialist

I started out with weakness in one arm, my family doc said it was a herniated disc in my neck and sent me to an orthopod...He did an MRI and said he wanted me to see a neuro-doc, which I did. After finding out what it feels like to be tasered, the neuro-doc said I needed to see a specialist. So I went to Houston to the guru of ALS for a rule out exam. In just two days they gave me the news, I have ALS....But then the guru said a funny thing; he said you can have the disease but it cannot have you unless you let it.
If God forbid you do have ALS it isnt the end of the world, just the begining of anew set of challenges for you to overcome; and you can overcome most of them....Keep your faith, your sense of humor and try to find the beauty in the simple victories.

wm
 

Jamiet

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Capt. Willy....

Who do you see at Houston. Dr. Appell by the way you speak? I see Dr. Simpson, his #2. I go monday for biopsy results.

rgds,

jamie
 

patricia1

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ltr said:
VMD - you are definitely right, the specialists all have a different story. And I have also read that fibrillations are seen on EMG in als. When I say vibration, yes it does feel like a vibrator inside, but it would have to be set very, very low. Almost like I wasn't sure what that sensation was until I held still, just laid there and felt it. Then when I pin pointed it to my arms I could actually feel it inside with my hand. When I told the doc she said that would have shown up on the EMG as fibrillations, but since it didn't, then it must be anxiety/stress/depression! Unbelievable! Does that mean I didn't really have it and was imagining it, or does it mean that those syndromes were causing fibrillations/vibrations?! Whatever. That's where I came up with my account of fibrillation/vibration. Discussing this with my other neuro, he said that was sensory and not related to als, so go figure. Maybe they just don't understand what I am talking about. I hope you guys do. Please tell me and let me know if anyone else experiences this now or in the past. And, yes, when I have this it is constant until I get up and move my body. I checked to see if it was still there by lying still again after getting up and it was. It is just such a small vibration that my own body movement makes it so I can't feel it. Getting up is the key! ~Leslie
Years before I had slurred speech I used to wake up to a vibration all over my body I told my boss who was a gastroentorolist and he said maybe I had the chills He didnt understand it felt like a vibration very mild and after waking up for a while it when away. Almost felt like I was frightened from a dream I woke up from But it happened for years Its hard to explain,but it wasnt twitching under the skin or fasc Those are different Pat
 

ltr

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That sounds exactly like what I am experiencing. I, too, felt like I would awake from a bad dream. Now that this vibration is back, it's happening the same way again. Pat, was it your whole body or isolated. When I had leg weakness it was in my legs. Now that I have arm and jaw weakness it is in my arms. I hope this is a symptom of myopathy and not going to switch somewhere down the line. I may be overworrying, but I'm not yet feeling at ease with my diagnosis. That probably stems from the uncaring nature of the doc I was just switched to. Leslie
 

patricia1

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ltr said:
That sounds exactly like what I am experiencing. I, too, felt like I would awake from a bad dream. Now that this vibration is back, it's happening the same way again. Pat, was it your whole body or isolated. When I had leg weakness it was in my legs. Now that I have arm and jaw weakness it is in my arms. I hope this is a symptom of myopathy and not going to switch somewhere down the line. I may be overworrying, but I'm not yet feeling at ease with my diagnosis. That probably stems from the uncaring nature of the doc I was just switched to. Leslie
I am starting to think I should have a muscle biopsy maybe I have myopathy But I have slurred speech I dont think that is one of the symptoms Pat
 

ltr

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Pat - I will send you some information as soon as I find the right one. Myopathy can effect your speech, swallowing.....actually give bulbar symptoms. I hate to make you build hope only to have it cause you sadness, but I think you should take the chance. If you were to get a different diagnosis, a better one, this board would be rejoicing for a very long time. On the other hand, hearing your symptoms makes me scared that my diagnosis could progress...........so I guess we're on a two way street with this one! ~Leslie
 

vmd

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ltr said:
VMD - you are definitely right, the specialists all have a different story. And I have also read that fibrillations are seen on EMG in als. When I say vibration, yes it does feel like a vibrator inside, but it would have to be set very, very low. Almost like I wasn't sure what that sensation was until I held still, just laid there and felt it. Then when I pin pointed it to my arms I could actually feel it inside with my hand. When I told the doc she said that would have shown up on the EMG as fibrillations, but since it didn't, then it must be anxiety/stress/depression! Unbelievable! Does that mean I didn't really have it and was imagining it, or does it mean that those syndromes were causing fibrillations/vibrations?! Whatever. That's where I came up with my account of fibrillation/vibration. Discussing this with my other neuro, he said that was sensory and not related to als, so go figure. Maybe they just don't understand what I am talking about. I hope you guys do. Please tell me and let me know if anyone else experiences this now or in the past. And, yes, when I have this it is constant until I get up and move my body. I checked to see if it was still there by lying still again after getting up and it was. It is just such a small vibration that my own body movement makes it so I can't feel it. Getting up is the key! ~Leslie

Leslie:

I experience much of what you are experiencing. If I sit still I can feel the "vibrations" or a type of "buzzing" sensation on my calf. My sensation is rhythmic, however, I don't know if your is. I mean it cycles every 2 or 3 seconds, it is not constant. Once I get up, I feel it less but only because there are other sensory signals competing with it. Since the "buzzing" sensation is weak, other stronger sensations mask the smaller one. These may not be fibrillations, however, as your neuor has pointed out. Do you also have fasciculations? You state that bulbar symptoms are also found in myopathy, but does that also include changes such as tongue atrophy, slurred speech, etc?
 

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Capt. Willy:

You were diagnosed very quickly, unlike many of us on these boards who need to wait a long time. You say you experienced right arm weakness, but you did not list other symptoms. If the neuro made a diagnosis based on his reading of the emgs, then the neuro must have picked up abnormalities in your other limbs or tongue? Do you remember on what basis the neuro made the diagnosis?
 

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VMD - yes, I do also have fasciculations. I also have had the muscle in my lip feel like it has formed a hook and is pulling my lip up and the wormlike muscle movements.

I have read some myopathy causing bulbar symptoms, but there are so many, and since I don't have those symptoms, I have been looking for which one it is again. I find many of them saying dysphagia, trouble speaking and weak facial muscles. Any of the muscles can atrophy with myopathy, but some info says it is reversible, while others say once that has happened it is permanent. Leslie
 

vmd

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Leslie:

Interesting. Thanks.
 

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Hi Annmarie, Happy belated birthday! I read your post on another thread that you are having a tough time. I just wanted to let you know I'm thinking of you and you remain in my prayers. Undoubtedly, you are under a lot of stress which might be contributing to worsening of symptoms, my point being that as stress levels fluctuate so too might your symptoms - that's my hope for you anyway! You are such a kind and giving person with amazing heart. I am still praying your diagnosed is not ALS! Best wishes, Sharon
 

patricia1

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annmarie happy birthday,you have been sounding more and more down i have concerns that maybe you could ask for a antidepressing to help you through this rough time. most of us will tell you we have needed help one time or another.It makes a different. Pat
 

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Yes, my good friend......I wish you to have the happiest birthday ever! And the best year possible, too. ~Leslie
 

vmd

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Annmarie, Happy birthday!

Like you, the worry about the unknown is overwhelming. I am trying to come to some form of acceptance of my situation, but this is not easy to do.

I am especially stressed by the constant fasciculations all over my body. You can't escape them and you know they may signal a serious pathological process.
 

patricia1

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I have ALS and never had facis until I was in my fifth year Pat
 
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