Multiple muscle symptoms - confused
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Hope everyone's having a good weekend.
I just wanted to post how I'm doing today. I have a new problem with breathing, which actually started about a week ago and seemed to go away (was very minor). Today though, I woke up and simply talking above a low level was affected for a few minutes. I could feel that I couldn't exhale enough to speak loudly. Now I feel completely out of breath no matter how much I relax and breath deeply and slowly (even while sitting here typing). The muscle movements are also jery at times with the inhale and exhale. Also, my mouth and throat were much dryer than normal as well.
Plust all of my body movements are more jittery. The high speed vibration hit my ring finger on the left hand (not visible on the surface).
Just wanted to post this in case anyone might have experienced this or has heard of this.
Thanks.
I just wanted to post how I'm doing today. I have a new problem with breathing, which actually started about a week ago and seemed to go away (was very minor). Today though, I woke up and simply talking above a low level was affected for a few minutes. I could feel that I couldn't exhale enough to speak loudly. Now I feel completely out of breath no matter how much I relax and breath deeply and slowly (even while sitting here typing). The muscle movements are also jery at times with the inhale and exhale. Also, my mouth and throat were much dryer than normal as well.
Plust all of my body movements are more jittery. The high speed vibration hit my ring finger on the left hand (not visible on the surface).
Just wanted to post this in case anyone might have experienced this or has heard of this.
Thanks.
quadbliss
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Hi niceguy,
If you don't already have one, it is time for a Bi-Pap. If you do have one, you will need to start wearing it during the day. I used one 24/7 for two years before I had to get a trach/vent. I carried it on the back of my wheelchair, powered it from my wheelchair batteries, and used a Nasal Aire (looks like a large O2 cannula) interface.
Mike
If you don't already have one, it is time for a Bi-Pap. If you do have one, you will need to start wearing it during the day. I used one 24/7 for two years before I had to get a trach/vent. I carried it on the back of my wheelchair, powered it from my wheelchair batteries, and used a Nasal Aire (looks like a large O2 cannula) interface.
Mike
Thanks quadbliss, if it continues to worsen I'll look into one.
I wanted to ask a few questions and let everyone know what's going on / changing.
My first question is - Is it unusual to experience weakness in all limbs at the same time with ALS? Both arms and legs and shoulders are weaker now, and they're progressing at the same rate (as far as I can tell). Also, walking down stairs is more akward than going up. Must be a different set of muscles that are being affected.
I'm experiencing hand cramping (mild in the right and left - more in the right).
My legs don't cramp up anymore and the spasticity has been gone since the original two weeks of the physical symptoms (Mid - late december).
My breathing is affected differently one day to the next. Yesterday, I was talking to my brother and exhaling was difficult (felt like my throat wanted to close and not let air through). When I stopped talking it got better. I haven't experienced any tongue problems or emotional problems yet. Swallowing isn't an issue other than the fact that I usually feel a need to cough after eating and sometimes after taking a drink.
I haven't recovered sensation in the tips of my thumbs and the index / middle fingers. The pins and needles will occur if I'm lying down in bed (in the hands and a little in the arms). Sometimes I'll feel it in the feet. I also notice more light muscle twitches here and there.
My back is weaker than before as well as my neck. Sometimes I get the feeling in my throat that I need to thro wup but my stomach feels fine. (forgot to mention tat in the beginning). Also, the underarms are feeling piched and the muscles cramp up in there easily. A strange thing occured 2 days ago - I woke up and noticed that raising my right arm caused discomfort in the arm pit. At first I thought it was a pulled muscle or caused by cramping. But it was also sore to the touch and it went away within 36 hours.
If anyone has any ideas or shared those symptoms please let me know. I'm waiting to get my blood work back - doctor said probably by tomorrow, and my EMG is next Wednesday. If the blood work comes back clean, I have a bad feeling the EMG won't.
Thanks again
I wanted to ask a few questions and let everyone know what's going on / changing.
My first question is - Is it unusual to experience weakness in all limbs at the same time with ALS? Both arms and legs and shoulders are weaker now, and they're progressing at the same rate (as far as I can tell). Also, walking down stairs is more akward than going up. Must be a different set of muscles that are being affected.
I'm experiencing hand cramping (mild in the right and left - more in the right).
My legs don't cramp up anymore and the spasticity has been gone since the original two weeks of the physical symptoms (Mid - late december).
My breathing is affected differently one day to the next. Yesterday, I was talking to my brother and exhaling was difficult (felt like my throat wanted to close and not let air through). When I stopped talking it got better. I haven't experienced any tongue problems or emotional problems yet. Swallowing isn't an issue other than the fact that I usually feel a need to cough after eating and sometimes after taking a drink.
I haven't recovered sensation in the tips of my thumbs and the index / middle fingers. The pins and needles will occur if I'm lying down in bed (in the hands and a little in the arms). Sometimes I'll feel it in the feet. I also notice more light muscle twitches here and there.
My back is weaker than before as well as my neck. Sometimes I get the feeling in my throat that I need to thro wup but my stomach feels fine. (forgot to mention tat in the beginning). Also, the underarms are feeling piched and the muscles cramp up in there easily. A strange thing occured 2 days ago - I woke up and noticed that raising my right arm caused discomfort in the arm pit. At first I thought it was a pulled muscle or caused by cramping. But it was also sore to the touch and it went away within 36 hours.
If anyone has any ideas or shared those symptoms please let me know. I'm waiting to get my blood work back - doctor said probably by tomorrow, and my EMG is next Wednesday. If the blood work comes back clean, I have a bad feeling the EMG won't.
Thanks again
mlb
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Good morning niceguy!
Have you had any test results yet? Have you had your heart, lungs and kidneys properly checked for possible problems? Also the pain in the arm pit I think means that your body is fighting an infection of some sort. Check with your doctor.
Take care.
Anna
Have you had any test results yet? Have you had your heart, lungs and kidneys properly checked for possible problems? Also the pain in the arm pit I think means that your body is fighting an infection of some sort. Check with your doctor.
Take care.
Anna
Hi Anna,mlb said:
No, unfortunately I haven't recieved results yet but thanks for asking. The blood work is a major concern of mine, I honestly hope something comes back that can be treated. If not, then I know the EMG will show something, it has to. My muscles are getting weaker everywhere and it's occuring quickly over the last week or so.
I've did some more research on ALS and possible causes. It looks like excessive levels of Glutamate are to blame. Being an amino acid it must affect the pH level in the brain (toxic) and they said it's know to kill cells when found in high concentrations.
The interesting thing about it is that it's invloved in nearly every physcial response. What I did - playing video games professionally - could have done something because I noticed the following while playing. For about a month to two months before I had the physical problems I noticed an improvement (at my level a noticable level of improvement doesn't usually occur). My consistency went up and even using the computer mouse was easier. Even people I competed against noticed the improvement in my hand eye / reflexes.
I hope I'm over analyzing but the improvement was noted by people other than myself... I'll keep you updated, and I should have the blood work results by tomorrow.
Thanks again
zac111
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emg update
sorry everyone i dont know how to make a new post are i would.i had my emg and nerve study done they said my emg was normal but my nerve conduction was abnormal does anyone have any i deals if this is suggestive of als?
sorry everyone i dont know how to make a new post are i would.i had my emg and nerve study done they said my emg was normal but my nerve conduction was abnormal does anyone have any i deals if this is suggestive of als?
Well, the blood work came back clean. The EMG is this Wednesday and I'll hope for the best.
I don't know what to think at this point. I figure the odds are againts ALS with my age, and no family history of brain problems but you never know with things like this (I'm 26). I definitely get a numb sensation on my tongue and lips once or twice a day, which I know shouldn't be ALS because it's the death of motor cells in the brain, not sensory cells / nerves.
I've noticed that the muscles in the left forearm are noticably smaller than my right arm (never noticed it before). The right leg muscle is a bit smaller than the left and I'm right side dominant. I haven't noticed a loss of strength yet so maybe I'm over analyzing and nothing's wrong.
I had to do some computer work the other day (assembly) and I didn't notice any issues with hand dexterity. Although for the next 3 days I hand mild cramps in the hands and I also occassionally get cramps in the toes of my left foot.
The sensation in my fingers hasn't come back at all, if anything it seems to be worse.
Another thing, I noticed is that I can usually tell when things will get worse. I tend to have a noticable brain fog type feeling. I'm not sharp intellectually, my balance is off etc and I've read that they're finding ALS can have an impact on cognitive function as well (mild forms of dementia).
I don't know what to think at this point. I figure the odds are againts ALS with my age, and no family history of brain problems but you never know with things like this (I'm 26). I definitely get a numb sensation on my tongue and lips once or twice a day, which I know shouldn't be ALS because it's the death of motor cells in the brain, not sensory cells / nerves.
I've noticed that the muscles in the left forearm are noticably smaller than my right arm (never noticed it before). The right leg muscle is a bit smaller than the left and I'm right side dominant. I haven't noticed a loss of strength yet so maybe I'm over analyzing and nothing's wrong.
I had to do some computer work the other day (assembly) and I didn't notice any issues with hand dexterity. Although for the next 3 days I hand mild cramps in the hands and I also occassionally get cramps in the toes of my left foot.
The sensation in my fingers hasn't come back at all, if anything it seems to be worse.
Another thing, I noticed is that I can usually tell when things will get worse. I tend to have a noticable brain fog type feeling. I'm not sharp intellectually, my balance is off etc and I've read that they're finding ALS can have an impact on cognitive function as well (mild forms of dementia).
Good news / bad news (possibly),
The good news is that the EMG was normal. I don't have pathalogical problems according to my Neuro. What he did say was that this could be a metabolic disorder.
I'm unfamiliar with them and just did some research. Sure enough, my symptoms like: muscle control in the arms (called ataxia), numbness in the fingers, balance problems at times, intolerence to exercise, cramping, and vision blurring all match up with certain metabolic disorders. My urine had a strong odor a couple of weeks ago (my right Glute muscle and muscle behind the right knee are smaller), and they say the urine change is because you're excreting broken down muscle. My body odor is also worse in my shoes and boxers (mentioned this to people before I knew it could be a problem).
We did notice that my hips are weaker, which is a common area to be initially affected with weakness. Some of the disorders progress but the majority of them don't.
We don't have a known family history of this (it's genetic) but then again it requires that both parents carry the recessive gene. So it's possible that a lot of people in my family history were carriers etc, if this is what it is.
The good news is that the EMG was normal. I don't have pathalogical problems according to my Neuro. What he did say was that this could be a metabolic disorder.
I'm unfamiliar with them and just did some research. Sure enough, my symptoms like: muscle control in the arms (called ataxia), numbness in the fingers, balance problems at times, intolerence to exercise, cramping, and vision blurring all match up with certain metabolic disorders. My urine had a strong odor a couple of weeks ago (my right Glute muscle and muscle behind the right knee are smaller), and they say the urine change is because you're excreting broken down muscle. My body odor is also worse in my shoes and boxers (mentioned this to people before I knew it could be a problem).
We did notice that my hips are weaker, which is a common area to be initially affected with weakness. Some of the disorders progress but the majority of them don't.
We don't have a known family history of this (it's genetic) but then again it requires that both parents carry the recessive gene. So it's possible that a lot of people in my family history were carriers etc, if this is what it is.
mlb
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Good morning Niceguy.
What tests did your doctor order? And which disorder did he suspect? Did he mention any names for those that cause your symptoms?
Your news are good news if your neuro ruled out ALS.
Anna
What tests did your doctor order? And which disorder did he suspect? Did he mention any names for those that cause your symptoms?
Your news are good news if your neuro ruled out ALS.
Anna
My Neuro doctor didn't have a clue on as to which disorder it could be. Apparently Metabolic disorders are very difficult to diagnose and there's usually nothing that can be done besides changing food intake.
Fortunately my MRI of the brain and spine were considered completely normal, which rules out (atleast when I had the scans done) some serious brain related Metabolic disorders. What I don't like is that the high speed vibration deep in the muscle has spread throughout my body. I feel it in my back, the entire arm and leg on my left side and it started in the right foot. The EMG was done on the right side of my body, because that's where you can see the difference in muscle size, and that's where the problems started.
Also, I mentioned BFS (Benign Fasiculations Syndrome) to my Nero and he said he's never heard of it...? He said a more likely explination is metabolic problems.
Fortunately my MRI of the brain and spine were considered completely normal, which rules out (atleast when I had the scans done) some serious brain related Metabolic disorders. What I don't like is that the high speed vibration deep in the muscle has spread throughout my body. I feel it in my back, the entire arm and leg on my left side and it started in the right foot. The EMG was done on the right side of my body, because that's where you can see the difference in muscle size, and that's where the problems started.
Also, I mentioned BFS (Benign Fasiculations Syndrome) to my Nero and he said he's never heard of it...? He said a more likely explination is metabolic problems.
mlb
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Hi niceguy.
Interesting that your neuro thinks that your ailment is a "metabolic disorder of some kind". Problems of the endocrine system can trigger all of the symptoms that you have.
Is he going to continue treating you or is he referring you to an endocrinologist or/and a dietician?
Interesting that your neuro thinks that your ailment is a "metabolic disorder of some kind". Problems of the endocrine system can trigger all of the symptoms that you have.
Is he going to continue treating you or is he referring you to an endocrinologist or/and a dietician?
Well, I'm going back to the neuro in 3 months but I have an appointment with an Endo soon.
The strange thing is that my "tremors" are spreading to the rest of my body (I can't see them). Now they're in my right foot and the left side gets them on a very frequent basis. I'm also experiencing sharp needle like pains in the calves every once in a while now (left and right).
Actually right now things feel bad. Lots of stabbing pains in the calves, numbness in the outer two fingers and the vibrations are occuring. Strange thing is that Coke seems to make things worse (maybe sugar issues?) and milk seems to help? I just hope they find something that can be treated with a change in my diet. It's definitely progressing whatever it is, fortunately my MRI's were clean (no contrast) and the strange thing is that I had extensive blood work done and that was OK as well. Maybe they didn't test for everything in the blood?
It could be a coincidence but I had a very bad boil near the right hip, and had surgery on it when I started to get a fever (I had bad advice from an initial doctor). Anyway, it's the right glute that has lost the muscle / tissue and the muscle above the right knee. So maybe something wierd occured when I had the problem with the boil or something from the inscision (some type of bacteria got in?). I also had the serious lyme symptoms which are unexplainable at this point, so maybe an atibotic treatment could help if all else fails.
I'll keep you updated.
The strange thing is that my "tremors" are spreading to the rest of my body (I can't see them). Now they're in my right foot and the left side gets them on a very frequent basis. I'm also experiencing sharp needle like pains in the calves every once in a while now (left and right).
Actually right now things feel bad. Lots of stabbing pains in the calves, numbness in the outer two fingers and the vibrations are occuring. Strange thing is that Coke seems to make things worse (maybe sugar issues?) and milk seems to help? I just hope they find something that can be treated with a change in my diet. It's definitely progressing whatever it is, fortunately my MRI's were clean (no contrast) and the strange thing is that I had extensive blood work done and that was OK as well. Maybe they didn't test for everything in the blood?
It could be a coincidence but I had a very bad boil near the right hip, and had surgery on it when I started to get a fever (I had bad advice from an initial doctor). Anyway, it's the right glute that has lost the muscle / tissue and the muscle above the right knee. So maybe something wierd occured when I had the problem with the boil or something from the inscision (some type of bacteria got in?). I also had the serious lyme symptoms which are unexplainable at this point, so maybe an atibotic treatment could help if all else fails.
I'll keep you updated.
I've also always had stiff muscles (atleast since highschool) and lately I found them tensed when they shouldn't be and I had to manually relax them. The increased tension occured for months before the more obvious symptoms occured.mlb said:
Also, on the family side, my dad told me he's alsways had "bad" muscles. Cramping and occasionally severe stabing sensaions in his side. He's also the pickiest eater I've ever seen (not that he's alergic they just seems to have negative effects on him in short periods of time). So I'm thinking I've inherited some type of late onset metabolic disorder, even though my mom doesn't have problems she could be carrying a gene for what I have.
mlb
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Glad at least that your neuro narrowed it down to what it is now. It is also possible that whatever the nature of your problem is, it is treatable even if only via diet.
Good luck and let us know the outcome.
Good luck and let us know the outcome.
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