atrophy

[rjteach]

went to a nuero today. third one in three months. gave me the basic tests. told him i have some dents in muscles. he said atrophy doesnt work that way. the whole muscle all together shrinks. told him my face seems different like i lost some muscle in it. he didnt have an answer and couldnt tell. Is there such thing as face atrophy as a beginning symptom of als or am i seeing things. told me he will give me and emg in three weeks. said he saw some twitching in my legs and he isnt worried. my reflexes and babinski was ok.

[wright]

Hey RJ

Atrophy can present in the manner you are stating BUT I believe you stated in your other thread that you don't have weakness. If you had true atrophy then you would definitely have signs of weakness (weakness will precede atrophy). I'm willing to bet that those "dents" were always there and you're just now noticing them. I believe you also said that the "dents" are scattered all over your body and that this happened in a matter of a couple of months. From what I have been told (on this forum) and what I have read, that is not typical of ALS. Keep an eye on things and go to your neuro if anything changes. Your neuro did tell you that you are fine, so in the meantime, try to relax.

[rjteach]

for responding wright. ive read your stuff on here and see that you are knowledgable. a couple of questions. I hear everything you are saying, and try to tell myself to relax. i take a xanax, but that makes me tired. A couple drinks helps too. never both at the same time obviously.

What scares me the most is when the twitching went to parts of my face and neck about three weeks ago. Some days nothing. some days maybe ten to 12. I did have tingling in my tongue around the same time. but the tingling went away after a couple weeks. two docs checked my tongue and said it looked fine. When i swallow i get that ball at the bottom of my throat feel. thats scares me the most. i mean can that be a sign of bulbar.

How would i have twitches all over my body for two months and show no weakness, be told im fine with tests. tell me the twitches are prob benign, then get them in my face and neck and it be more serious. I took about 8 anti oxidants for about 3 weeks. i dont see how that could of causes a problem.

Can a person get atophy of the face, i dont see it at all when i look up stuff on the computer.

the doctor said weakness would come in a specific area. not all over your body at once. Its so tough to define weakness. Can i do 25 tri cep pushups. yes. Can i bench press 135 155 6 to 8 times. what i normally would do in a workout. yes. I did it last week just to check. Can i lift up my 30 pound daughter in my left arm every day for the last three months. yes. I tell my doc that. he says its a good sign, but that people are different.

Can you have bulbar and limb onset at the same time. I have read no. I mean i thought if you had bulbar, then its just bulbar symptoms. not a bunch of stuff going on with your lilmbs. And i thought if someone had limb onset then it stays in those areas in the beginning stages.

Ive read some stories about head trauma and think of the time in March when one of my students blasted the soccer ball from five feet away off the side of my head and i almost blacked out. but never did. thanks again for your responses

[bluebottle]

OK - I am no expert and have no medical backgroud but I do think it is worth mentioning that people with anxiety often get that lump in the throat feeling. There is no lump but it feels very real to the individual. This is easily sorted by seeing your doctor and may go some way to ease that burden for you. You may not think you have anxiety or this is an isssue for you. You said the Doc checked your tongue, did you metion your ball in throat? If so did the Doc check your neck and throat? What explaination was given? Do you need to readdress this with you Doc?

[rjteach]

thanks for responding. The doc looked at my neck and throat. didnt see anything strange or different. Said we will keep an eye on it. whatever that means. Im hoping its just anxiety.

[wright]

Hello again RJ

Twitching can occur anywhere there is muscle and you have lots of muscles in your face. Given the fact that your twitching is more or less global and sounds like it occurred in a very short period . . . AND . . . after all of this time you have no signs of weaknes, it is most likely benign. Keep an eye on things and if you start to have weakness or other symptoms, then call your neuro. Also, for your peace of mind, have your neuro do another EMG in 3 or 4 months.

As far as the "lump in your throat" feeling: bluebottle is right in that it can be caused by anxiety. There are lots of muscles involved in swallowing, one of which is the cricopharyngeal muscle. If it spasms (and this can be caused by anxiety and a number of other things) it will cause the pharynx (part of the tubing that leads into your esophagus) to get smaller and cause the "lump in the throat" feeling. It is called cricopharyneal spasm and the condition is known as globus pharyngeus. It will most likely resolve on its own and can take up to months. Of course, if it doesn't go away or gets worse, then you want to contact your doc. He already told you to keep an eye on it, so it's good he is already aware of it.

Can you get atrophy of the face: yes you can but again, I bet what you're seeing has always been there. As I said above, just keep an eye on things and look for progression or change.

Can you get bulbar and limb onset at the same time: there have been documented reports of such a thing happening . . . BUT . . . it is INCREDIBLY rare. I have many journal articles that show ALS starts focally and then spreads radially. As always, there are exceptions, but those exceptions are once again rare, so global weakness in all of your limbs as well as bulbar problems is not typical ALS.

You seem to be on top of things as are the docs you are seeing, so listen to what they say and keep them informed as to what is happening to you, both physically and mentally.

Take care.

[Sammantha]

Hi Rteach, there is a muscle disorder that presents with facial thinning it is called myotonic muscular dystrophy. I have almost all the symptoms and signs except my case presented asymmetrical and my creatinine levels are actually real low. In muscular dystrophy's they are usually high. It is a real slow progressing disorder and its inherited so you can take a blood test for it. I have myotonia and was turned on to MMD by a friend on here. I must say (I think) i have myotonia because the hand that has wasting will loose its ability to move if i am holding something for a long time or if it is really cold. I see my neuro July 25. When i first noticed my muscle wasting i did not know that is what is was. I knew my body was changing shape, but it was my doc who gave name for it. At one point i thought my bones were growing!! My elbow, shoulder, knee they were all so boney and pointy! Kind of funny.. Doctors will not diagnose muscle wasting unless a EMG says it and they can see it, if they see it and the EMG does not the docs will say no. If the EMG sees it and the docs cant, they can still say no..... It's very subjective unless it is undeniabley obvious.

[rjteach]

once again for your input. much appreciated. My doc said that also, that the twitching would be more focal and not all over your body within a week, or month. so thats a good thing to know.

would bulbar occur with speech problems first. or it depends on the individual

Is tongue atrophy or tongue fascs a sign of bulbar or can that also be a sign of limb onset if it happens within the first two months or so.

[wright]

Bulbar symptoms can start with swallowing problems, speech problems, etc. It depends on the individual.

Anything that occurs with the tongue when it comes to ALS is a bulbar issue. "Bulbar" is so named because it deals with the brainstem (which innervates, among other things, the muscles of speech and swallowing), which is shaped like a bulb.

As far as muscle atrophy: you can have muscle atrophy and have a completely clean EMG. For example: disuse muscle atrophy, which could occur if you had broken your leg and had a cast for a couple of months, would cause muscle atrophy but there would be nothing pathological about it (the EMG would be clean). You could also have muscle denervation, for example, due to a nerve impingement or nerve crush or some autoimmune disorder, which then causes muscle atrophy . . . and if the nerve regrew and reinnervated the muscle, the EMG could be clean . . . and the atrophy could still be present.

[vmd]

wright:

You mention that weakness precedes atrophy in ALS. This makes sense in that the muscle is not being properly stimulated by motor neurons, thus one experiences weakness and lack of muscle use leads to atrophy. Would this be correct or is the process less linear and more interactive? Also, where do fasciculations fall into this sequence of events? If weakness precedes atrophy, where would you place fasciculations? Thanks.

[awieleba]

I just wanted throw my 1cent in ( I don't feel it is worth 2)
I have had a tight feeling in my throat on and off for 10 years. Then in the last 6 months I had that feeling along with a phelgm ball. My doc said anxiety, anxiety, anxiety! So I took the Anti-anxiety, and finally the tight feeling is gone that I had for so long! However, The recent ball in my throat feeling is still there! it is worse some days than others but always feels like draining mucus. So, for me, i think the tight feeling was anxiety because it did go away, but the phelgm ball in my case has not. Which leads me to believe that it is part of the "whatever" is wrong with me. Take care.

[wright]

Hello VMD

The atrophy that occurs with ALS is initially denervation atrophy and then later on, will be a combination of denervation atrophy and disuse atrophy. I have been on a quest for some time to find a study to determine the timeline of it all, but I have yet to find such a study and I have access to just about every scientific journal on the planet, dating back over 50 years. I've also talked to a few neuros and all they can really tell me is how it doesn't happen.
As far as the fasics: it appears to be variable. The literature indicates that it is rare to have fasics as a first sign and that it most often develops after muscle atrophy has occured. But rare doesn't meant that it doesn't happen (i.e. fasics preceding weakness and atrophy). There are people on this forum that have had fasics that precede weakness and atrophy. I don't know what the percentages are on the forum, but in the literature, they cite less than 10% of patients present with fasics prior to weakness and atrophy.

[rjteach]

can you have benign fascics and als twitches at the same time. or if its benign than any other twitch is benign also.

if someone has bulbar signs is it just bulbar or can they twitch and have possible weakness atrophy in other partys of their body, or does bulbar just stay above the neck for the early onset.

[wright]

Theoretically speaking, people can have both benign twitches and ALS twitches at the same time. But theoretically, people can have bening twitches and ALS and get struck by lightning and win the lottery. My point is that it would probably be rare to be stricken with both at the same time.

As I said in another post, it is extremely rare to have bulbar and limb onset ALS. I have read of some cases but they are few. ALS is almost always either limb onset, bulbar onset or thoracic onset. The timing of the spread of symptoms is highly variable, too.

[awieleba]

Hi, you said that you feel like your face has thinned out? My has done the same. i didnt notice it untill I saw photo's of my self in the hosp. with the birth of my daughter. I thought it was strange that my face would appear so thin as i had just given birth. so I looked at photo's of my 2nd son's birth, where I had gained less wieght and sure enough my face was plumper like would expect after birth. I was not concerned, untill all this other stuff started to happen. have you looked at photo's to see if your face really has thinned? My family says, oh your getting older, well I must be aging at warp speed! Does anyone reading this thread know if facial thinning can start before any other symptom? about a few months after i noticed this, i have had alot twitching in my face, it has calmed down a bit lately. Any in put would be appreciated!

[rose]

awieleba, It sounds like you and Sammantha have some similar circumstances and symptoms. I'd imagine you're roughly around the same age too. I think she recently has some new thoughts as to what may be causing her problems, so maybe a search of her posts could be helpful to you.

As far as how I experienced the bulbar onset. It was my voice that changed way before I noticed any swallowing difficulties, appearance changes. I was originally being treated for Sjogren's syndrome, which is an autoimmune condition that causes dryness. (The excretory gland are damaged by inflammation.).... So, I was looking in my mouth a lot as my doctors would ask me these questions about how dry my mouth was, etc. And I noticed that my lips on the inside of my mouth were changing in appearance.

That salivary ridge (that before all of this started I'd never even noticed having ) was riding up near the tops of my teeth, and the whole inside of my lips were getting flatter. Kind of like how dogs have that "inner"lip? thats what it was starting to look like, the way it stayed up flat against my teeth.

So, I thought this was from the Sjogren's. Inside my mouth, even my cheeks seemed like they were caving in, and I was constantly biting them. On the outside, that was a way different story, as I was on prednisone, (which makes for major chipmunk cheeks!)

It wasn't until my tongue actually started to atrophy, and the shape of it changed that I had any consciousness of problems eating and so forth. It was so gradual, and not something I was ever looking for as a "sign" that I'd gotten used to some of the difficulties, such as actually getting the food in my mouth to travel out of it! I just wasn't thinking about that it didn't use to stay in my mouth.

My neurologist has noted that my right side of my face is thinner and flatter than the left, but again, I hadn't really been aware of it.

Now, the latest and greatest LOL, my lips don't seal tightly, its harder and harder to drink out of a diet coke bottle, for example, and liquids want to leak out. I'd had my lips tattooed with permanent lip color a few years back, and now that section of my lip that is the weakest has a dark horizontal color line in it, that I'm assuming is due to the skin not being stretched as tight as it was before (kind of like how rubber balloons get lighter in color the more air that is in them). And my lips are wrinkly. (All of this is something I'm just not happy about, can you tell??)

I hope this helps answer your questions some. take care, :)

[patricia1]

Rose
I gave up on drinking out of a can or bottle long ago Its straws for me.
When I am at my sons they give me a straw thats stuck in a Thomas the train cup and my grandson gets mad .lol

Pat

[BethU]

Does anyone reading this thread know if facial thinning can start before any other symptom? about a few months after i noticed this, i have had alot twitching in my face, it has calmed down a bit lately. Any in put would be appreciated!

Don't know if it starts first, but if you're losing any weight, it def. would occur.

The past couple of months I have been having problems with my upper lip covering my teeth. I figured it was partly dry mouth (the left side of my face stiffened up about a year ago, and the right side of my mouth droops open and pulls way to the right side, so I mouth breathe, altho I try not to, but can't hold my mouth closed), and my upper lip gets stuck on my teeth. It FEELS like the lip doesn't "fit" ... it's not long enough to cover my teeth any more. I thought I was being paranoid until this thread.

Now I wonder if there is atrophy of some of my facial muscles. Lost 23 pounds in last two years, so my face naturally thinned from that.

I have bulbar onset 2 1/2 years now (dx with ALS two months ago). Have twitching underneath both eyes, which has actually been there for years ... doctors always said it was benign ... and had twitching on my chin last year, which has gone away.

If there are lots of muscles in the face, as Wright says, it makes sense that they would atrophy along with the tongue. But what comes first, I don't know. But it definitely feels like my lips have become too small for my teeth, and my bite is really off. It feels like my lower jaw no longer fits correctly with the upper. I need to see a dentist badly, as the bite being off only makes it that much harder to eat. Of course, I also have a terrible lip seal ... or rather, practically none at all.

Don't know if that helps at all. I just automatically figure any strange symptom I get now is ALS.
Beth

[brendapals]

I was also dx with Sjogren's about 4 yrs ago. My mouth and eyes are extremely dry, at least until about 6 months ago. I work in my rheum office, and I just wonder if I should ask him about continuing to take Plaquenil. I didn't mention in my first post that I do have the tongue fasics. I didn't even notice it until I went to my second neuro on 6/3/08 and he pointed it out to me.

[rose]

I was also dx with Sjogren's about 4 yrs ago. My mouth and eyes are extremely dry, at least until about 6 months ago. I work in my rheum office, and I just wonder if I should ask him about continuing to take Plaquenil. I didn't mention in my first post that I do have the tongue fasics. I didn't even notice it until I went to my second neuro on 6/3/08 and he pointed it out to me.

Hi Brenda, I do not see your other post, this is the only one that shows up on the forum, so, of course I don't know what you said in it, or what brought you here.

Plaquenil I believe is a fairly safe drug. Are you having your eyes checked though on a 6 month basis? Last April it was found that I had lesions on the retina of my left eye. I don't know if it was the Plaquenil or the Prednisone, as I was on both of them concurrently for a little less than a year. I also took Methotrexate, but I do not believe it has the same potential to damage the eye.

Did your bloodwork show positive for the antibodies? Mine did not. My doctors still tried to make the case that it was the Sjogren's because my mouth and eyes were/are so dry. However one of the rheumatologists that I was referred to pointed out that if my Sjogrens were that severe, that even if I didn't make the antibodies, that I would be dry other places than just the eyes and mouth, and I did not have dryness of the nose or dryness "elsewhere".

This doctor felt that Sjogren's would have done more damage to the rest of my body before infiltrating my nervous system.

Recently I will actually feel my mouth watering, its been so dry for so long that I really notice it when it does, so I don't know what that's about.

After I showed no improvement following a two week course of a very high dosage of the prednisone, all of my doctors concurred that there just wasn't anything to substantiate my neuro problems being rheumatic/inflammatory in nature.

Anyway, I could not read any other posts from you, and at this time the counter under your name says "1" posts, so it may be that the moderators need to view your other one first before it is up on the website.

take care :)

[brendapals]

I'm still looking for my first post as well. Let me try to catch everyone up. I had a positive ANA 1:1680 about 4 yrs ago. My rheum first wanted to say it was lupus. I am too strong willed and didn't want to believe I could have lupus. At that time, I was an ER nurse, had a 3yr old at home, with a 95 yr old, 10 and 7 yr old. That doesn't even count my husband! He was 45.
I waited a few months and had the antibodies for SSA/SSB done and a lot of other labs. My SSA was positive. That's when he said it was Sjogren's syndrome. I have been taking Plaquentil since then. I do get my eyes checked every 6 months and so far, everything is OK.
I was dx with ALS on 6/3/08. I'm not sure if taking the Plaquenil makes any difference and I forgot to ask my neuro when I was there on 7/1/08. I just started taking Rilutek and lithium on 7/4/08 and I really don't expect to be able to see any difference for a while. My husband has asked me repeatedly "how do you feel". I know he is trying to be supportive, but I'm sure I'm not the most polite person right now.
Hope to hear back from you- let me know if you can't see my posts.
thanks,
Brenda

[Sammantha]

Hi Rose, thanks for your reply from before.... I wanted to chime in because i too bite the inside of my cheeks constantly!! Now i bite the tip of my tongue too! When first started it i thought it was my wisdom teeth so i had them pulled. When my jaw was cramping at first i thought it was a molar that had a cavity so i had it pulled despite protests from my dentist about how healthy the root was and that i should have had a root canal. Well when your face feels like someone puched it and it gets rock hard then you could care less if your tooth could be saved! Needless to say that is way before we put facial muscle symptoms together with the other muscles, luckily my muscles dont work up to that intensity of spasm...... I've said it before, a lot of things tie in eventually! Hope you had a great fourth, Sammantha