Annmarie

[Jamiet]

How was your appt. annmarie? Just thinking of you.

rgds,

jamie

[Jamiet]

We could both write a book at separate times, and i guarantee you, it would contain the exact same amount of pages.

Why does it seem, the twitching won't happen in front of the neuro? The same exact thing happened to me, literally.

[jimercat]

Hi annmarie,

Hope things continue to go well for you. Where did you go for this exam? An ALS Clinic? Sorry if I haven't kept up very well. I really don't understand the pushing down of the hands. I don't want to pee in your cornflakes, but my husband can push the neuros hands down with no prob. But I must say he seems to have slow progression.

Hoping your symptoms go away!!!

[jimercat]

Hi annmarie,

Hope things continue to go well for you. Where did you go for this exam? An ALS Clinic? Sorry if I haven't kept up very well. I really don't understand the pushing down of the hands. I don't want to pee in your cornflakes:mrgreen: , but my husband can push the neuros hands down with no prob. But I must say he seems to have slow progression.

Hoping your symptoms go away!!!

[Jamiet]

Annmarie....read your PM....it's interesting....reading your response, i was writing the PM at the same time... you'll see the resemblence.

scary.

[patricia1]

Thats great news Hope how you feel better about things and get on and enjoy your life. I thought you said you have slurred speech If you do what did the doc say about that, Pat

[ltr]

Annmarie - I tried to call you this afternoon, probably before you were back. Check your PM's! Leslie

[colcath]

Hi quite new to the board,my palms twitch 24/7 also legs and arches and stomach,nero said it was BFS but I know I am slowly going worse.Where do I go from here.Had emg said there was slight muscle and nerve damage in the right leg,had scans they said I had thoracic disc rupture but to risky to operate.One neuro said it could be motor neuro,but another said it was BFS who do you believe.:confused:

[Jamiet]

Get to an ALS clinic as annmarie says, they are the experts.

rgds,

jamie

[vmd]

annmarie:

Good news, congratulations! Can you see your palm fasciculating? When you say 24/7 do you mean every second you see fascics, or that they are there every few seconds 24 hours a day? Also, if you do not have tongue atrophy, then tongue fascics likely indicates more of a benign condition. If you do not slurr, then it is also a good sign.

[CindyM]

AnnMarie- good news, right? Let's pray it stays that way! In my case, the docs noticed the fasics and pointed them out to me but I have clean emgs and nvcs and a clean spinal tap so they are waiting. So don't fret that the fasics went away right when they did-the Boston AS clinic says fasics are just a piece of the puzzle and if we can still walk on our heels, grip a pencil, move our tongues from side to side, then we can relax a little.

Jimmercat, [QUOTE] I don't want to pee in your cornflakes...QUOTE] I had to laugh out loud at that expression. Thanks for the chuckle. Cindy

[Jamiet]

we use cheerios down south here....

pee in your cheerios


lol

rgds,


jamie

[jimercat]

Actually corn flakes get peed on in Georgia as well as Cheerios. And the bush out back seems to be over fertilized!

[Jamiet]

LOl....keep up the humor...

I'm farther south dan you....we don't even speak de rit englis here.

[jimercat]

dat tru

y'all in a whole nuther wurld!!!

[vmd]

annmarie:

I wouldn't worry about the tongue issues unless you see atrophy and slurred speech. Unfortunately, I do have those symptoms and things aren't looking too good for me. Thanks for asking.

[Jamiet]

What does your tongue atrophy look like VMD?

I bite my tongue, it hurts, it twitches, it vibrates....all kinda stupid stuff.

[patricia1]

a throphy of the tongue is scalloped on the side goes to one side when you stick it out Tongue is shorter and soed not move side to side quickly. You cant whisle as well and you have slurred speech You dont have to have all of those symptoms But if you have at least some of them yor most likely have als Pat

[Jamiet]

Pat,

It's funny, i've showed the atrophy (scalloped) and that it's pointed, shorter and twtiches like a tourettes syndrome tongue and she (my ALS spec) was in the least bit worried, still said she was pretty confident it wasn't ALS. I also fumble / slur words and "don't connect" real well, like saying wrong word.

I didn't want to be rude, but research says.....tongue atrophy and the other issues is pretty concerning for ALS. I'm puzzled.

Answers coming monday.

rgds,

jamie

[vmd]

Jamie:

I have the scalloped look that Pat describes. Good luck witrh your biopsy. I will keep you in my prayers.

[ltr]

Jamie - I don't think the vibrations (medically they are called fibrillations) are seen in als. They are seen in myopathy, though. I could be wrong, but that's what the doc told me. I have tremendous vibrations when I lay down to rest and they wake me in the morning. If I push down hard on my bicep I can feel the vibration. But, it didn't show on EMG so it's all in my head!!!!! ~Leslie

[patricia1]

My first symptoms years before slurred speech was a vibration when I woke up in the morning How that is gone.Pat

[ltr]

Sure hope they don't change my diagnosis to als down the road then. I hate neurology!

[pldo]

I get that too- well the Drs said you are fine so you are fine and why do you keep complaining about it. I have decided that I am going to stop complaining about it- because what can that do? I wish that there was an easy way but there is not . . .

Okay, a few questions what do you mean vibrations? I twitch badly once I wake up for a few minutes but as soon as I get up the twitches are gone until the end of the day when I sit down th rest and watch tv. Scalloped tounge? Mine has little dents in the sides (both) but it does not hang to one side and it does not twitch and I do not have slurred speech but I do have more trouble finding the right words now a days- so what does that mean?

[pldo]

Oh an in my part of Georgia it is piss in my wheaties- and that is how I heard it too when I was living in Boston and in Washington DC- too funny!

[jimercat]

pldo-

what area in GA?:)

some folks out in the country don't have access to wheaties:mrgreen:

[ltr]

The first time I experienced the "vibrations" was early in the morning and it woke me up. I thought we had had a mild earth tremor, but then realized it was my own body. Now when I get it, if I press firmly on a part of my body that is vibrating, I can feel it deep inside. One of my neuros said it was sensory so it had nothing to do with als, but another said it was fibrillations and was because of myopathy. My latest neuro said it must be stress, anxiety or depression because no fibrillations showed up on the EMG. I guess it didn't matter to her that I wasn't having the symptom the day I went for my EMG and that they only occurred at the time I was going to sleep or waking. I love how they talk like they are God and know what a person feels. Leslie

[pldo]

Atlanta suburbs- did not realize the country folk did not have access to the breakfast of champions :)

[vmd]

Jamie - I don't think the vibrations (medically they are called fibrillations) are seen in als. They are seen in myopathy, though. I could be wrong, but that's what the doc told me. I have tremendous vibrations when I lay down to rest and they wake me in the morning. If I push down hard on my bicep I can feel the vibration. But, it didn't show on EMG so it's all in my head!!!!! ~Leslie


Leslie:

I have read many accounts which specify that fibrillations are definitely seen in als. This is part of the problem with various specialists, you do not know who is right. Also, with respect to fibrillations, What do they feel like? Like having a vibrator "inside" your skin? A feeling of having a "worm" under your skin?
Is the vibration constant or does it come and go? Perhaps vibrations are different from fibrillations?


I have read two accounts from two "experts" that state that the patient can never feel fibrillations, since they can only be picked up by the EMG scan. We feel fasciculations sometimes, but these two experts were adamant that the patient does not sense fibrillations.

One other question that puzzles me is whether a person can have slurred speech, yet not have tongue weakness or atrophy? Shouldn't these go together?

[ltr]

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

[captwilly]

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]

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]

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]

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]

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]

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]

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?

[vmd]

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?

[ltr]

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]

Leslie:

Interesting. Thanks.

[saska]

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 dx is not ALS! Best wishes, Sharon

[patricia1]

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

[ltr]

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

[vmd]

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]

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

[CindyM]

hope your symptoms magically disappear...

To Annmarie, Leslie, Conrad, VMD, and even Jamie (if you're still reading these posts) We should prepare ourself for another possibility. My ALS clinic says my symptoms most likely will not get better and I should prepare myself for getting worse. Reading between the lines I think that means whatever I have is in "pause" mode, meaning I am not perfectly healthy but may not get bad enough for them to be able to DX anything for certain. To me, that means I must stop wishing for good health and NEVER wish for a DX of ALS. Never. Instead, what I must do is live live with the health I have, and do all I can while I can. IMO. It is just the philosophy that works for me...REgards, Cindy

[patricia1]

Before I was Dx with ALS,I would wake up every morning hopng I would be better .That maybe it was something that needed to take its course. Now I wake up hoping I am not worse. I agree with Cindy.You cant be consumed with this disease or else it will eventually consume you. There are people on this forum coping with ALS and waiting for a Dx and there are others not coping well at all .And I worry that if they continue like this it will take over their lives the lives of heir familys. Yes I am scared very scare But that will not change the fact that I am dying. We all are dying ,young ,old ,sick healthy, rich or poor and theres not a thing we can do about it . So please used the days you can as long as you can . Because you dont know if you are going to be worse when you wake up in the morning God Bless us All.Thanks. Pat

[vmd]

Cindy: Yes, good thoughts. It does seem as though some of us will have to wait a long time until a diagnosis. Meanwhile, we place ourselves in God's hands. If some of us have ALS, we already know from the various patterns in the PALS group, that there is no such thing as the norm. The PALS have different rates of progression, seemingly.

By the way, Pat, perhaps you did not have fasciculations until later because your initial diagnosis was based on bulbar symptoms. It seems those with bulbar onset do not develop the weakness and fasciculation issues until later. Also, from what I remember, your diagnosis is bulbar palsy, correct? I should add that this is not my first experience with fasciculations. I can recall having bouts of fasciculations in the past, as long as 15 years ago or longer. However, those fasciculations were almost certainly BFS because I did not experience corresponding weakness nor did they present as they do now. I can tell the fasciculations I have now are different in form, frequency, and duration.

annmarie: I wish the same for you. However, if my symptoms do disappear, I will classify it as a miracle.

This is somewhat unrelated to the discussion above, but how many of you have disability insurance? Any ideas about how and where to acquire disability insurance or can you direct me to some resources? Thanks.

[patricia1]

Dear vmd I always thought that bulbar onset is very quick Is that you experience with reading up on it. Pat

[ltr]

Annmarie - I hope your birthday today was a great day! Happy Birthday. ~Leslie

[vmd]

Dear vmd I always thought that bulbar onset is very quick Is that you experience with reading up on it. Pat

Yes, that is what I have read.