Hi Rich - it was the neuromuscular doc who didn't believe the poly diagnosed, but has started me on Prednisone for what she called mild myopathy. She said she didn't believe the poly part because most patient's she see's with it are using assistive devices and don't pass the neuro strength exam as well. I don't know what to think of that, except that in all my research I have found that not all patient's present as typical. The NIH also doesn't agree with the diagnosed because of the twitching. It seems twitching could happen with inflammation, but I'm not the doc! Anyway, my twitches are generalized, but also I have had them in some places constantly, like bicep, buttock, abdomen. My jaw feels rather weak and had some twitching, but only for the one day. Maybe the twitches are really from the underlying cause of the myopathy, like if a virus caused it. The rheumo called today and said if I didn't start to improve in the next two weeks she was beginning the chemotherapy drug used for this, I think Methotrexate. Thanks for your post, it helps!
Most twitches are benign...I can assure anyone
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ucla2004
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ltr said:
What do you mean constantly? I also have them constantly in those areas as well. They come and go but I have seen them in the last 3 months non-stop. I really believe these twitches are non-related to your condition and should not disregard polymyositis as part of your dr. differential. For example, let me give you an analogy. If I am working up a case for a suspicion of MS and see all the symptoms related to this condition (pins and needle, ocular blindness, tingling, incontinence), should I disregard MS because this patient suffers from twitches? Of course not because it could just be plausible that hat this patient just happens to have MS with twitches. you see my logic. Twitches are just too common to disregard a disease simply because someone complains of twitches. Hope this helps.
It does help. You certainly have a point, it may be quite a coincidence, but the twitching may just be that. When I say constantly, I mean that those places mentioned twitch quite often. I notice those places when I am not active, but that does not mean they are not twitching when I am active. I think the abdominal area bothers me the most because I am so weak in that area, can't sit up straight. I haven't had a second opinion and maybe I should get that just for some more input, since my neuro is treating me with steroids. Thanks alot for you replies.
Jamiet
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We all have a bad situation, and each one has it's good and bad points. I think of you alot leslie, it's got to be double hard on your own. I have to admit, if it were just me and the kids, i just don't know how i would do it, i don't know.
pat and cindy and the rest of you are wonderful, we're all in here supporting one another, trying to lift each others spirits, as hard as it may be.
I wish a miracle would happen, we would all wake up tomorrow and feel GREAT. I bet all of you in here, just wish we coudl have that feeling back for just a few days.
pat and cindy and the rest of you are wonderful, we're all in here supporting one another, trying to lift each others spirits, as hard as it may be.
I wish a miracle would happen, we would all wake up tomorrow and feel GREAT. I bet all of you in here, just wish we coudl have that feeling back for just a few days.
patricia1
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I was thinking if we all listed 1-10 our symptoms the first to the present,maybe that would help to compare. Instead of a long tread just a list Than we can compare Pat
1 Lump in throat
2tingling in head
3 rash
4slurred speech
5rapid heartbeat
6ARm weakness
7leg fatigue
8arm arthropy
9weight loss
10extreme fatigue
11 choking on water or combination foods
1 Lump in throat
2tingling in head
3 rash
4slurred speech
5rapid heartbeat
6ARm weakness
7leg fatigue
8arm arthropy
9weight loss
10extreme fatigue
11 choking on water or combination foods
pldo
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I really appreciate everyone's help. I think what we are all most worried about is leaving family behind- especially children. My daughter is so wonderful- sweet and smiley and I would not want anything to take that away from her. I am so scared that something will. If I did not have anyone who I know would be here for her I would cry every minute of every day.
As for the symptoms- I think all of us have twitching, some sort of bulbar issues (tongue twitching, slurred speech, scalloped tongue, and/or trouble swallowing.). I do not have weakness but I am begining to think I have atrophy- I have these little dents in my skin where there were not ones before (But I am also losing weight after pregnancy and my body is changing- and I understand that)
As for the neuros- I had blood work done at one over a month ago and they have yet to get me the results. They never call back, so I am assuming they are normal- but what if they are not and this could all be cured. I had an emg on my legs and everything was clear- no abnormailities so he will not really talk to me anymore- and also blames anxiety. It is sort of a catch 22 - the anxiety is being caused by the fact that I am not feeling well and I need your help to tell me why.
I do pray that we all get better!
As for the symptoms- I think all of us have twitching, some sort of bulbar issues (tongue twitching, slurred speech, scalloped tongue, and/or trouble swallowing.). I do not have weakness but I am begining to think I have atrophy- I have these little dents in my skin where there were not ones before (But I am also losing weight after pregnancy and my body is changing- and I understand that)
As for the neuros- I had blood work done at one over a month ago and they have yet to get me the results. They never call back, so I am assuming they are normal- but what if they are not and this could all be cured. I had an emg on my legs and everything was clear- no abnormailities so he will not really talk to me anymore- and also blames anxiety. It is sort of a catch 22 - the anxiety is being caused by the fact that I am not feeling well and I need your help to tell me why.
I do pray that we all get better!
Lorie
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Twitches
Muscle twitching
Definition:
Muscle twitches are fine movements of a small area of muscle.
Alternative Names:
Muscle fasciculation; Fasciculations of muscle
Considerations:
Muscle twitching is the result of minor local muscle contractions or the uncontrollable twitching of a single muscle group served by a single motor nerve fiber or filament.
Muscle twitches are minor and often go unnoticed. Some are common and normal, while others indicate a neurologic disorder.
Common Causes:
Benign twitches (not caused by disease or disorders)
Often affecting the eyelids, calf, or thumb
Normal and quite common, often triggered by stress or anxiety
A diet deficiency
Drug overdose (caffeine)
Drug side effect (such as diuretics, corticosteroids and estrogens)
Exercise
Symptoms suggestive of a neurological cause of fasciculations include:
Wasting of muscle
Weakness
Other findings of nerve dysfunction
Neurological illnesses where fasciculations are seen include:
Chronic denervation of muscle due to disc compression of nerve exiting the spinal cord
ALS (Lou Gehrig's disease)
Spinal muscular atrophy
Muscular dystrophy
Myopathy
Muscle twitching
Definition:
Muscle twitches are fine movements of a small area of muscle.
Alternative Names:
Muscle fasciculation; Fasciculations of muscle
Considerations:
Muscle twitching is the result of minor local muscle contractions or the uncontrollable twitching of a single muscle group served by a single motor nerve fiber or filament.
Muscle twitches are minor and often go unnoticed. Some are common and normal, while others indicate a neurologic disorder.
Common Causes:
Benign twitches (not caused by disease or disorders)
Often affecting the eyelids, calf, or thumb
Normal and quite common, often triggered by stress or anxiety
A diet deficiency
Drug overdose (caffeine)
Drug side effect (such as diuretics, corticosteroids and estrogens)
Exercise
Symptoms suggestive of a neurological cause of fasciculations include:
Wasting of muscle
Weakness
Other findings of nerve dysfunction
Neurological illnesses where fasciculations are seen include:
Chronic denervation of muscle due to disc compression of nerve exiting the spinal cord
ALS (Lou Gehrig's disease)
Spinal muscular atrophy
Muscular dystrophy
Myopathy
Lorie
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ALS
Initial Symptoms of the Disease-ALS
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
After Tim having The Twitching and Cramping for seven years before diagnosed. I don't take the Twitching so lightly. Along with the Cramping. I see Tim's Twitching and my own. The look the same. 1-/12" years for me. Who knows whats down the road.
I went to my M.D. this morning to get the blood work test done that the Specialist that studies Underlying Neuromuscular Disorders said I needed. He said I didn't need a Neuro. He had sent them to my Neuro. I had them sent to mine and Tim's M.D.
She is great. She knows Tim's history and mine. When I went in this morning, not only did she have those test done. She threw in several others. She knows something is up!
Especially since it took seven years to get diagnosed for Tim. I hope its just a big coincidence. I am not worrying about it. I told my husband if these test come back negative like all Tim's did in the beginning. I was not going back to Doctor's, except for my ear disease. Unless it gets drastically worse. l will keep seeing her. She will stay on top of it, for sure!
I have regular cramping/twitching and some nights I wake up in Cramp agony in my legs, I hurt so bad I scream. I wake my husband a daughter up from it. It's crazy! I even take Med. for it before I go to bed.
I just don't anymore folks! We will see how these test come back?
I will keep you tuned in.
Lorie:-D
Initial Symptoms of the Disease-ALS
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
After Tim having The Twitching and Cramping for seven years before diagnosed. I don't take the Twitching so lightly. Along with the Cramping. I see Tim's Twitching and my own. The look the same. 1-/12" years for me. Who knows whats down the road.
I went to my M.D. this morning to get the blood work test done that the Specialist that studies Underlying Neuromuscular Disorders said I needed. He said I didn't need a Neuro. He had sent them to my Neuro. I had them sent to mine and Tim's M.D.
She is great. She knows Tim's history and mine. When I went in this morning, not only did she have those test done. She threw in several others. She knows something is up!
Especially since it took seven years to get diagnosed for Tim. I hope its just a big coincidence. I am not worrying about it. I told my husband if these test come back negative like all Tim's did in the beginning. I was not going back to Doctor's, except for my ear disease. Unless it gets drastically worse. l will keep seeing her. She will stay on top of it, for sure!
I have regular cramping/twitching and some nights I wake up in Cramp agony in my legs, I hurt so bad I scream. I wake my husband a daughter up from it. It's crazy! I even take Med. for it before I go to bed.
I just don't anymore folks! We will see how these test come back?
I will keep you tuned in.
Lorie:-D
CindyM
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Annmarie- I don't see anything wrong with asking for a prescription to help with anxiety. Anybody with a lot on their plate should get some relief now and then.
Pat- my symptoms started like this:
My new theory is that maybe there is a new type of autoimmune disease that some of us have. Or maybe, since we are all healthier than in past generations, it takes longer for the MND to ramp up.
It's a thought...Cindy
Pat- my symptoms started like this:
pain and cramping in hands
weakness in hands
numbness in hands
weakness in legs
exaustion after any mild activity. This lasts into several days now.
inability to climb stairs most of the time
twitching like worms under skin
inability to jump or hop most of the time
pain and cramping in legs and feet
drooling at night and sometimes the day
sometimes words sound slurred if I am tired
tripping and occasional foot drop/occasional eyes don't open on first couple of tries in the morning
tingling in face and tongue - mouth twists all up when I try to relax
My new theory is that maybe there is a new type of autoimmune disease that some of us have. Or maybe, since we are all healthier than in past generations, it takes longer for the MND to ramp up.
It's a thought...Cindy
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CindyM
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Gee, Lorie-I always figured what keeps you going is you found a positive channel for your nerves and anxiety. Somebody once told me you can't hold two thoughts at once in your mind. So maybe being an advocate for ALS awareness keeps your mind off your troubles? I bet Mike's paintings do that for him! What do you say, Mike?
Lorie
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I think you are right!
I think you are right! If it wasn't for giving and caring so much I probably would graduate to the "Nut" house. ALS Advocate it is! My Brothers tell me we need to cut me into fourths. I am everywhere and in to so many things! I better not slow down.
Thanks Cindy,
Lorie:-D
I think you are right! If it wasn't for giving and caring so much I probably would graduate to the "Nut" house. ALS Advocate it is! My Brothers tell me we need to cut me into fourths. I am everywhere and in to so many things! I better not slow down.
Thanks Cindy,
Lorie:-D
Pat - I started like this:
1. Rapid heartbeat, up to 155 beats per minute
2. Tingling on right side, even head
3. "Electrical" feeling in head/light-headedness
4. Tremors
5. Vibrations
6. Extreme fatigue/exhaustion
7. Weakness, mostly legs, now moved on to trunk, arms, neck. Have to "lift" right leg to walk
8. Fasciculations
9. Mild cramping
10. Lump in throat/hoarseness/cramp in throat
The first four symptoms were the beginning and have subsided except for occasional paresthesia (tingling) still on the right side of my head. The weird thing is that some days I can hardly hold my arms up to drive, but other days I can, yet I feel progression.
Cindy - I also have to try a few times to open my eyes some mornings. This scared me the first couple of times it happened.
1. Rapid heartbeat, up to 155 beats per minute
2. Tingling on right side, even head
3. "Electrical" feeling in head/light-headedness
4. Tremors
5. Vibrations
6. Extreme fatigue/exhaustion
7. Weakness, mostly legs, now moved on to trunk, arms, neck. Have to "lift" right leg to walk
8. Fasciculations
9. Mild cramping
10. Lump in throat/hoarseness/cramp in throat
The first four symptoms were the beginning and have subsided except for occasional paresthesia (tingling) still on the right side of my head. The weird thing is that some days I can hardly hold my arms up to drive, but other days I can, yet I feel progression.
Cindy - I also have to try a few times to open my eyes some mornings. This scared me the first couple of times it happened.
My symptoms are as follows:
1. tremors (about 5 years ago-diagnosed as essential tremor)
2. One year later, jaw tremor (usually a sign of Parkinson's disease)
3. Stiff back or neck (had this many months before the symptoms below developed)
4. muscle fatigue (had this for years)
5. Weakness right arm (this year in March, approximately)
6. fasciculations-started as diffuse, now both diffuse and localized (constant)-I also had fasciculations many years ago, perhaps 10-15, but with no accompanying weakness
7. atrophy in arms? I may have had this one year before muscle weakness, however
8. biting tongue when I eat, even when I speak
9. noticed tongue atrophy (may have been there before, however), also a sensation that there is something in the back of my throat when I swallow
10. slurred speech
all during this time, I have also experienced fatigue
By the way, Leslie, I can empathize with you as I live alone and have no one else to rely on, if and when I start to deteriorate further. The majority of those that post here appear to be married. Thankfully, they have their spouses to look after them. What about those of us who are alone? Yet, another fear to confront.
1. tremors (about 5 years ago-diagnosed as essential tremor)
2. One year later, jaw tremor (usually a sign of Parkinson's disease)
3. Stiff back or neck (had this many months before the symptoms below developed)
4. muscle fatigue (had this for years)
5. Weakness right arm (this year in March, approximately)
6. fasciculations-started as diffuse, now both diffuse and localized (constant)-I also had fasciculations many years ago, perhaps 10-15, but with no accompanying weakness
7. atrophy in arms? I may have had this one year before muscle weakness, however
8. biting tongue when I eat, even when I speak
9. noticed tongue atrophy (may have been there before, however), also a sensation that there is something in the back of my throat when I swallow
10. slurred speech
all during this time, I have also experienced fatigue
By the way, Leslie, I can empathize with you as I live alone and have no one else to rely on, if and when I start to deteriorate further. The majority of those that post here appear to be married. Thankfully, they have their spouses to look after them. What about those of us who are alone? Yet, another fear to confront.
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