View Full Version : Freaked!!!
dand_75
08-12-2007, 12:53 PM
OK, I read today thAT SOME OF YOU HAD SLURRED SPEACH BUT NOBODY COULD HEAR IT BUT YOU. hOW IS THAT POSSIBLE? i KEEP ASKING MY MOTHER AND WIFE IF THEY NOTICE ANYTHING DIFFERENT ABOUT MY SPEECH AND THEY GET MAD AND SAY OF COURSE NOT!!! i FEEL FUNNY IN MY MOUTH WHEN i SAY THINGS LIKE "SHOWER" OR SOMETHING LIKE IT. Damn caps lock!!! End of my tongue will feel mildly numb at times and when I stick my tongue way out I do see tine twitches that i can't feel in it but after a sec they go away. Any answers. I went through an ALS scare about 5-7 years ago and don't want to do it again!!!
CindyM
08-12-2007, 02:36 PM
Hi Dan- I think people close to you might not hear the slurred speach as their ear hears the way they are accomstomed to hearing you talk. If -big If-it gets worse eventually they will hear it. You say you went through a scare a few years back so you probably know how difficult it is to DX a condition for which there are no tests. i am sorry your symptoms are kicking in again. Cindy
patricia1
08-12-2007, 03:39 PM
OK, I read today thAT SOME OF YOU HAD SLURRED SPEACH BUT NOBODY COULD HEAR IT BUT YOU. hOW IS THAT POSSIBLE? i KEEP ASKING MY MOTHER AND WIFE IF THEY NOTICE ANYTHING DIFFERENT ABOUT MY SPEECH AND THEY GET MAD AND SAY OF COURSE NOT!!! i FEEL FUNNY IN MY MOUTH WHEN i SAY THINGS LIKE "SHOWER" OR SOMETHING LIKE IT. Damn caps lock!!! End of my tongue will feel mildly numb at times and when I stick my tongue way out I do see tine twitches that i can't feel in it but after a sec they go away. Any answers. I went through an ALS scare about 5-7 years ago and don't want to do it again!!!
I taped my voice and it diffently was slurred My family said no I think they didnt want to scare me or themselves Pat
fla-cherie
08-12-2007, 04:28 PM
Hi Dan: I'm sorry you're experiencing slurred speech, but it may be so subtle you're the only one who can tell now. I'm 60 & had bulbar onset/left footdrop Feb '05 with tongue swelling, raspy voice; by April '05 voice fading in & out and foot dragging, but the dr couldn't see it--she said tongue problems were acid reflux which I never had. As spring/summer passed, twitching, etc. ramped up, but neuro first thought stroke. Rec'd ALS dx Feb '06.
However, in the year or so prior to Feb '05, the thing that was wierd was, when calling the cat, I could NOT say "Kitty, Kitty" normally anymore! My tongue was a little sore, too. I distinctly remember this happening, but thought it was due to dental problems. I now believe these were the first symptoms. Try hollering this or other phrases repeatedly and see what happens. It's very important to keep good chronological records of all these things to take to doctors; my SSDI was based on health journal notes I supplied during dx testing rounds.
I will pray this is not ALS for you. Cherie
guwainengle
08-12-2007, 05:25 PM
Does your tounge twitch when it is at rest inside your mouth or when you stick it out-- my tounge is very active when I stick it out-- but relaxed it seems like nothing-- Also-- do you ever get the throat twitch?-- I usually get them at nioght when I am going to bed--
G
dand_75
08-12-2007, 05:39 PM
No throat twitches yet. My tongue doesn't hurt but at times my throat does and it feels like its from overuse or something. I went through this back in 2000-2002 but not with these symptoms. I had 3 emgs and all were clear. My neuro trained in houston under what he called the ALS guru for one year doiunig nothing but emgs on als pts. I ended up having nothing and i hope this is too. My wife and mother are fed up with me but the more I read on here the more I seem to find symptoms that i have. I have asked people at work if i slur and they all say no. Same with my family. Patricias posts really scare me the most, though. No offense. She has had almost all of my symptoms. My voice is rough soundinfg today but it may just be tired/sinus or something. Also when i look down my lower jaw seems to want to fall forward and it FEELS like it takes an unusual amount of energy to pull it back in. My mouth is still closed too. Who kbnows??? I trust my neuro but it has been 5 years ago. I know one clean emg doesn't mean immunity. Is 31 young for the disease? My grandfather was one of 13 children and he had a brother and a sister die from it. He died at 80 from an infection. My mind is firing like a spark plug but the thought of leaving my babies in too much to bear. Also I am viciously claustrophibic and the thought of paralysis is nauseating and panic inducing. Thanks for letting me vent. I want to go back to my neuro but frankly I'm embarrassed. I told him last timew I wouldn't be back unless I was dragging a leg or something. I'm psycho, I know!!!
Jamiet
08-12-2007, 10:10 PM
You need to have an EMG of the caracnythroid muscles (bulbar) done. They will check your vocal cords, neck, tongue, cheek, etc.
Who is your doctor? I may be looking for a second opionion to do another EMG, can you PM me the name of the doctor that you used. I want an expert in EMG's.
Stick around, were here to help.
PS: I'm 32, i'm still not dx with anything.
Best Regards,
Jamie
S
jimercat
08-13-2007, 06:58 PM
dand,
Don't be embarrassed to go back to the neuro. A lot of times the neuro will say it isn't ALS and then tell you to come back in 3 or 6 months so they can check again. From what I've read on this forum and others, ALS can be hard to dx. So if you feel you are driving yourself crazy, it is better to just go and get tested again rather tan go insane about it. After all he is getting paid for it!
CindyM
08-13-2007, 07:54 PM
Hi Dan- My grandfather was one of 13 children and he had a brother and a sister die from it. Maybe you should ask for the SOD 1 gene test. Just to put your mind at ease. Cindy
fla-cherie
08-13-2007, 09:55 PM
Hi Jamiet: I'm here in the FLA Panhandle on the Gulf Coast and where I was sent for my second opinion, I would highly recommend if no ALS clinics nearer to you in Lafayette. I went to UAB in Birmingham and had three hours of EMGs and nerve conduction tests that were so much more thorough and intense than my neuro did here. The consulting dr there was Shin J. Oh, Prof of Neurology, and he has a very competent and compassionate staff. After these tests were complete, I received dx, and 3 weeks later when muscle biopsy results were in, Dr Oh called me re: specific motoor neurons involved. Hope you find someplace to get the better EMGs. Cherie
Jamiet
08-14-2007, 10:32 AM
The thing is, my EMG was done at Houston Methodist ALS clinic. I had one in Octboer 06 & One in Jan 2007.
The one in oct, he saw somethingin my left quad. I heard the ticking. Then, i asked him because i knew it wasn't supposed to sound like that, if he saw something... All he told me is that......there was no weakness "persay".....that was a "persay".
Then, the one in january.... the EMG expert did my EMG and NCV in about all of 10 minutes. he told me it was abnormal. then, he never did check my tongue, my paraspinals, nothing in the face or bulbar region. Only my hand, arm, leg and foot.
he told me i had very very irritated muscles and it was abnormal. Then, he was like a kid in a candy store with me on the NCV. he kept shocking me and there was an afterdischarge after like 10 shocks....well, i guess if i stick your damn hand in a socket like 10 times, you will start aftershocking too huh?
All in all, i don't think my last EMG was adequate, as the guy stopped everything when he got this afterdischarge on the NCV. THen, the neuro dismisses it as anxiety. Interesting, one neuro tells me it's an abnormal EMG, then, the next says it's abnormal because of anxiety. Yes...anxiety, no how does anxiety make an emg anbormal, do you think it could be ant in my pants or something like that.
What idiots. I'm fed up with careless doctors (god complexes).
patricia1
08-15-2007, 08:33 AM
I know how you feel The first EMG I had was done by a Doctor that was so mean He wouldnt answer any of my questions and kept sticking needles in me and making me move the part the needlle was in and the pain was terrible. He kept saying you can so it my way or leave So may husband almost clocked him and told him to disconnect me.And we reported him to the AMA and the insurance co and the referring doctor. Since then I have had many EMG and they are not painful at all Just mildly uncomfortable. By the way that EMG was Normal. and so were the others. I still think they are learning about ALS ,and still havent a clue. And having seen at least eight neuros since my dx I found they are all alittle Nuts LOL PAt
I know how you feel The first EMG I had was done by a Doctor that was so mean He wouldnt answer any of my questions and kept sticking needles in me and making me move the part the needlle was in and the pain was terrible. He kept saying you can so it my way or leave So may husband almost clocked him and told him to disconnect me.And we reported him to the AMA and the insurance co and the referring doctor. Since then I have had many EMG and they are not painful at all Just mildly uncomfortable. By the way that EMG was Normal. and so were the others. I still think they are learning about ALS ,and still havent a clue. And having seen at least eight neuros since my dx I found they are all alittle Nuts LOL PAt
Hi Patricia,
The 3 neuros I've seen so far have given me the impression that lower motor neuron involvement would show up on an EMG. So far most of my issues are spasticity/cramps/weakness (arms/legs) & fasciculations (all over) - some atrophy on a biopsy but I don't notice any visually.
I have jaw jerk too which I think can be related to psuedobulbar stuff, but I dont have any speech swallowing issues at this point.
What lead your neuro to give an ALS dx with normal EMGs? Seems weird.. or am I misinformed about EMGs?
Thanks!
-Rob
Annmarie,
Yep - my neuros said the same thing, no ALS with normal EMG. They're assuming upper motor neuron disease only at this point & the plan is to repeat EMGs. The weird thing is I had slightly EMGs back in May '06 & Jan '07, showing some small motor unit potentials & increased turns. This was a very quick EMG at Kaiser though. Recent EMG (this month) at the Cleveland Clinic was much more thorough and was completely normal. I don't know what to make of the denervation/reinnervation & fiber type grouping in my biopsy along with the fasciculations but normal EMG. It just doesn't make sense to me.
Did you have a muscle biopsy? If so, what did it show?
Thanks!
-Rob
Annmarie,
My strength is pretty good.. 5/5 in all extremeties except my left hand was slightly weak. My short burst strength is generally good I just can't sustain it. I had a treadmill test & was fully anerobic within 3 minutes of pretty slow speed (2.5mph). I can still pick up things that are pretty heavy, I just can't carry them for long. I can still walk, but my legs tire really easily & start to ache. I can do 30 minutes of minor excercise with a physical therapist but then I need to go to sleep right afterwards & I have lots of discomfort & cramps the next day I think from increased spasticity.
I'm not sure if I have atrophy or not.. I tend to think not - my arms are pretty thin but they've always been on the thin side .. I think it's more just weight loss from diet change & possibly atrophy from reduced use.
I am going to look into starting some sort of pain medication again so that I can tolerate more excercise. To make things more complicated, I apparently also have some sort of metabolic muscle disease which is separate and in addition to the motor neuron disease. This was confirmed through a lactic acid excercise test where my lactic acid levels only elevated to about half the level they should have. So I don't know how much of my weakness & pain is due to the metabolic disease vs the motor neuron disease. I tend to think it's mostly the motor neuron disease since I had had pain with excercise for many years that didn't feel like what I feel now.
patricia1
08-22-2007, 08:53 PM
Hi Guys Went to my ALS clinic and asked for a muscle biopsy My neuro Say if I thought you didnt have ALS I would give you one, Let me give you another emg and if it is still ok I will give you a Biopsy He said A emg is a better test then a Muscle biopsy because a muscle biopsy is given if there is a muscle disease which I know you dont have ,like myopathy It doesnt really show nerve damage like EMg does
So now I am going to make an appt for a EMG.
Oh by the way he said my arm weakness is worse which I knew but for a person that was seen 9 months ago ,he thinks my progession is not really that bad. My swallowing and speech is the same and my legs are only slightly weaker in the ankles.
I asked him why if I had bulbar onset Why am I still here. He explain the reason people die quickly with Bulbar onset,is because those people usually die from pnuemonia from aspiration or choke to death because of trouble swallowing. He read in a text they some bulbar patients live very long if they dont run into problems with choking and swallowing because the disease doesnt move to other areas as quickly. I dont know it he was blowing smoke up my a--. Any way he calls me lucky. Yep real lucky! Who is he kidding. I keep telling him what if you are missing something.He said you saw 5 neuros who said ALS,But that was after 5 years, I said. I really think they dont really listen.
Thats my new story Stay tune Pat
patricia1
08-22-2007, 08:56 PM
Dont over do with the exercise Its not good You will pay the next day. Pat
Well, Pat,you must be so frustrated with all the years of this. It seems really unfair that any doc would deny you any test you ask for. What skin is it of their neck? Your the one suffering and their the ones that can say you are lucky and no need to do a test. it just makes me so mad. In my opinion, take a woman ill like you, you deserve whatever you ask for and whatever they can do for you. I understand the biopsy doesn't show nerve damage, but he hasn't even seen the nerve damage or muscle damage on emg either. I hope your emg is good, because I want you to still have faith and hope for 8 more years.
Rob - I understood that metabolic disease can cause all of your symptoms and that it mimics als. Especially the metabolic myopathies. Are you being treated for it?
Rob - I understood that metabolic disease can cause all of your symptoms and that it mimics als. Especially the metabolic myopathies. Are you being treated for it?
They're still trying to figure out what the metabolic disease is about but both OHSU & Cleveland Clinic has said that the metabolic disease is separate and in addition to the motor neuron disease. Cleveland Clinic said that the picture with my reflexes is absolutely indicating upper motor neuron disease (brisk leg & arm reflexes, hoffmans, tremnors and jaw reflex) - esp the jaw reflex they said that was certainly upper motor neuron.
My biopsy had shown neurogenic changes also - dennervation/reinnervation & fiber type grouping.
I was hopeful too that something metabolic could explain everything, but it seems like I'm just lucky enough to have two weird things :P
That really stinks. How do you treat your metabolic problems, or do you just have to live with it? It seems that would just be so much to handle with your MN problems as well. The reason I ask is I wonder if my myopathy problems are metabolic related and if some of these als like symptoms are because of it. I really wish your problems could be helped with the metabolic treatments.
Jamiet
08-24-2007, 10:00 AM
Well Pat, i'm very sorry....but know exactly how you feel my friend. I just don't have a name to mine.
Today is a horrible day for me...i feel as if i've been run over with a freight train.
Annmarie, thinking of you for monday.
patricia1
08-24-2007, 10:31 AM
I know I have those days as well. Sometimes I have better days than others , when I went to my neuro I was having a good day. Its when you have a tooth ache and the day you go to the dentist its gone.LOL Right now we are getting my house ready for a open house ,. My husband is out there killing himself cutting bushes and cleaning up getting attacked by bees. and I am of no help. I used to trim the bushes and clean up and get bit by the bees LOL But its all on him I feel so bad I am of no help anymore. I am a hinder in his life. Tomorrow he has to wax the hardwood floors and clean up the tile floors and I cant help him I feel so useless I am having a pity party sorry Your friend Pat
Pat:
I know it's difficult to rely on others, even when you know they do it because they love you and would not have it any other way. I will keep you in my prayers.
That really stinks. How do you treat your metabolic problems, or do you just have to live with it? It seems that would just be so much to handle with your MN problems as well. The reason I ask is I wonder if my myopathy problems are metabolic related and if some of these als like symptoms are because of it. I really wish your problems could be helped with the metabolic treatments.
Well I started going to the doctor a little over two years ago for exercise intolerance & soreness -- presumably this is from the metabolic disease.
The motor neuron symptoms started around 10-12 months ago & now I can't do enough excercise to get that sort of metabolic soreness anymore - just the spasticity pain. So I guess the motor neuron disease has sort of taken care of the metabolic disease in a way :) I am definitely pursuing it though -- they're doing enzyme testing on the muscle biopsy sample they froze back in December.
What are your reflexes like? Brisk just in the knee or elsewhere? How old are you?
-Rob
That's interesting, now you have me wondering if they froze my sample. I am really glad to hear that you are keeping on them with your workup. You definitely have to advocate for yourself if you want any real answers. I am 44 and have always been active and young for my age. My reflexes have been very strange. When my right leg weakness started my knee reflex was very hyper, though I saw my gp this time. The next time I had a doc check reflexes they were fine, then the next time they were brisk again. The docs haven't mentioned it to me, I am just going by the changes I noted. The neuro did say that I had a brisk right eye reflex, which, to me was strange because my right side is the side that bothers me the most. The researcher from NIH said I would probably benefit from going to the Johns Hopkins Myositis Clinic. I have to work on an authorization from my ins. co. and get there.....taking my sample with me. O
