Aa
Secondary Progressive
Hi, I have a neurologist now, who is great, but recently, I thought I had a dvt in the right leg, but a doppler ruled it out. The pain and stiffness which caused some edema, was dx as spasticity. I was also told my MS is now secondary progressive.
I've had foot drop and reduced sensation in that leg for a while, but not this tight Achilles tendon and calf. Walking has become much more difficult, which is causing more back spasms.
I was told to increase my Tizanadine from 4mg 3 x/day with 8mg at bedtime, to 6mg, tapered to 8mg 4 x/ day. I'm not sure if I want to be on that much. I'm not sure if it helps that much. But I recently reduced my xanax dose which may have made the spasticity worse, however, so increasing the Tizanadine might help? Any thoughts?
Also, does anyone ever have any jerking motion problems? I don't think about that being an MS symptom. Thought I'd ask. Since I'm now having more disability that doesn't go away, it's distressing. Fatigue is so bad, I have been spending way too much time in bed.
On top of the fatigue, I have been feeling depression. It has been quite significant. Since mom died in May, I've been working to sell her house and haven't been as productive as I'd like. It scares me. I'm feeling a hopelessness that I don't like one bit.
MS used to be in the background, except for the fatigue and exacerbations, with Systemic Sclerosis, GI nightmares, Diabetes, and back problems, etc, being the biggies. Having MS become a big problem is too much! I'm overwhelmed.
? Tizanadine, ? Jerking movements, ? Ideas for fatigue, depression, and spasticity. Thanks guys. Hope everyone is doing ok.
I've had foot drop and reduced sensation in that leg for a while, but not this tight Achilles tendon and calf. Walking has become much more difficult, which is causing more back spasms.
I was told to increase my Tizanadine from 4mg 3 x/day with 8mg at bedtime, to 6mg, tapered to 8mg 4 x/ day. I'm not sure if I want to be on that much. I'm not sure if it helps that much. But I recently reduced my xanax dose which may have made the spasticity worse, however, so increasing the Tizanadine might help? Any thoughts?
Also, does anyone ever have any jerking motion problems? I don't think about that being an MS symptom. Thought I'd ask. Since I'm now having more disability that doesn't go away, it's distressing. Fatigue is so bad, I have been spending way too much time in bed.
On top of the fatigue, I have been feeling depression. It has been quite significant. Since mom died in May, I've been working to sell her house and haven't been as productive as I'd like. It scares me. I'm feeling a hopelessness that I don't like one bit.
MS used to be in the background, except for the fatigue and exacerbations, with Systemic Sclerosis, GI nightmares, Diabetes, and back problems, etc, being the biggies. Having MS become a big problem is too much! I'm overwhelmed.
? Tizanadine, ? Jerking movements, ? Ideas for fatigue, depression, and spasticity. Thanks guys. Hope everyone is doing ok.
Jan, I forgot to offer my condolences on the loss of your mom. That's tough enough when you're not battling illness too. I'm sorry.
ess
ess
I get occasional myoclonic jerks where either leg may kick out and in very briefly, sometimes several times in a day but not anywhere near constantly. This happens when I'm in bed or sitting. Since it's very mild for me it's not a big deal at all, just more or less interesting, a bit startling too. For this to be considered myoclonic, the limb must visibly move, not simply be felt to move.
As has been said, a lot of conditions can cause it, but if you have MS and pre-MS you didn't get these jerks, it's reasonable to chalk them up to MS. I'm guessing they come from random nerve firing due to cns lesions, just as brief but extremely painful strikes to my arms or especially my feet do. Fortunately for me, these all are very minor in the scheme of things, but those for whom they are major negatives should really talk to their neuros about some form of intervention.
ess
.
As has been said, a lot of conditions can cause it, but if you have MS and pre-MS you didn't get these jerks, it's reasonable to chalk them up to MS. I'm guessing they come from random nerve firing due to cns lesions, just as brief but extremely painful strikes to my arms or especially my feet do. Fortunately for me, these all are very minor in the scheme of things, but those for whom they are major negatives should really talk to their neuros about some form of intervention.
ess
.
COMMUNITY LEADER
I too am really very sorry to hear of your loss and what you've been going through lately....HUGS!!
IF these jerky movements your experiencing are happening whilst your 'awake' then you could very well be experiencing 'Myoclonus' as Myoclonus presents itself with sudden short lived jerk, kind of resulting in an out of know where jerky movement and what the heck was that kind of feeling, which is not actually uncommon in MS. I believe Myoclonus is connected with brain stem, spinal and cortical lesions but there could be others...
"Most myoclonic jerks are due to a brief burst of muscular activity, resulting in positive myoclonus [Shibasaki and Hallett, 2005]. When jerks result from brief cessation of ongoing muscular activity, they are called negative myoclonus (NM).
Positive myoclonus is generally more common, while NM frequently occurs in hospital settings, as a result of toxic–metabolic causes. A combination of both forms may be present in the same disease, as in posthypoxic myoclonus or progressive myoclonic epilepsies (PMEs)."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036960/
General information about the different types of myoclonus:
"Classifying the many different forms of myoclonus is difficult because the causes, effects, and responses to therapy vary widely. Listed below are the types most commonly described.
Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.
Cortical reflex myoclonus is thought to be a type of epilepsy that originates in the cerebral cortex - the outer layer, or "gray matter," of the brain, responsible for much of the information processing that takes place in the brain. In this type of myoclonus, jerks usually involve only a few muscles in one part of the body, but jerks involving many muscles also may occur. Cortical reflex myoclonus can be intensified when individuals attempt to move in a certain way (action myoclonus) or perceive a particular sensation.
Essential myoclonus occurs in the absence of epilepsy or other apparent abnormalities in the brain or nerves. It can occur randomly in people with no family history, but it also can appear among members of the same family, indicating that it sometimes may be an inherited disorder. Essential myoclonus tends to be stable without increasing in severity over time. In some families, there is an association of essential myoclonus, essential tremor, and even a form of dystonia, called myoclonus dystonia.
Another form of essential myoclonus may be a type of epilepsy with no known cause.
Palatal myoclonus is a regular, rhythmic contraction of one or both sides of the rear of the roof of the mouth, called the soft palate. These contractions may be accompanied by myoclonus in other muscles, including those in the face, tongue, throat, and diaphragm. The contractions are very rapid, occurring as often as 150 times a minute, and may persist during sleep. The condition usually appears in adults and can last indefinitely. Some people with palatal myoclonus regard it as a minor problem, although some occasionally complain of a "clicking" sound in the ear, a noise made as the muscles in the soft palate contract. The disorder can cause discomfort and severe pain in some individuals.
Progressive myoclonus epilepsy (PME) is a group of diseases characterized by myoclonus, epileptic seizures, and other serious symptoms such as trouble walking or speaking. These rare disorders often get worse over time and sometimes are fatal. Studies have identified many forms of PME. Lafora body disease is inherited as an autosomal recessive disorder, meaning that the disease occurs only when a child inherits two copies of a defective gene, one from each parent. Lafora body disease is characterized by myoclonus, epileptic seizures, and dementia (progressive loss of memory and other intellectual functions).
A second group of PME diseases belonging to the class of cerebral storage diseases usually involves myoclonus, visual problems, dementia, and dystonia (sustained muscle contractions that cause twisting movements or abnormal postures). Another group of PME disorders in the class of system degenerations often is accompanied by action myoclonus, seizures, and problems with balance and walking. Many of these PME diseases begin in childhood or adolescence.
Reticular reflex myoclonus is thought to be a type of generalized epilepsy that originates in the brain stem, the part of the brain that connects to the spinal cord and controls vital functions such as breathing and heartbeat. Myoclonic jerks usually affect the whole body, with muscles on both sides of the body affected simultaneously. In some people, myoclonic jerks occur in only a part of the body, such as the legs, with all the muscles in that part being involved in each jerk. Reticular reflex myoclonus can be triggered by either a voluntary movement or an external stimulus.
Stimulus-sensitive myoclonus is triggered by a variety of external events, including noise, movement, and light. Surprise may increase the sensitivity of the individual.
Sleep myoclonus occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some forms appear to be stimulus-sensitive. Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor."
http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm
I think you should bring this to the attention of your neurologist, it might be a secondary issue but it's very possibly lesion based and if it's new, even though your status has changed to SPMS you could very well be relapsing, so definitely worth talking to your neuro about it.
HUGS...........JJ
IF these jerky movements your experiencing are happening whilst your 'awake' then you could very well be experiencing 'Myoclonus' as Myoclonus presents itself with sudden short lived jerk, kind of resulting in an out of know where jerky movement and what the heck was that kind of feeling, which is not actually uncommon in MS. I believe Myoclonus is connected with brain stem, spinal and cortical lesions but there could be others...
"Most myoclonic jerks are due to a brief burst of muscular activity, resulting in positive myoclonus [Shibasaki and Hallett, 2005]. When jerks result from brief cessation of ongoing muscular activity, they are called negative myoclonus (NM).
Positive myoclonus is generally more common, while NM frequently occurs in hospital settings, as a result of toxic–metabolic causes. A combination of both forms may be present in the same disease, as in posthypoxic myoclonus or progressive myoclonic epilepsies (PMEs)."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036960/
General information about the different types of myoclonus:
"Classifying the many different forms of myoclonus is difficult because the causes, effects, and responses to therapy vary widely. Listed below are the types most commonly described.
Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.
Cortical reflex myoclonus is thought to be a type of epilepsy that originates in the cerebral cortex - the outer layer, or "gray matter," of the brain, responsible for much of the information processing that takes place in the brain. In this type of myoclonus, jerks usually involve only a few muscles in one part of the body, but jerks involving many muscles also may occur. Cortical reflex myoclonus can be intensified when individuals attempt to move in a certain way (action myoclonus) or perceive a particular sensation.
Essential myoclonus occurs in the absence of epilepsy or other apparent abnormalities in the brain or nerves. It can occur randomly in people with no family history, but it also can appear among members of the same family, indicating that it sometimes may be an inherited disorder. Essential myoclonus tends to be stable without increasing in severity over time. In some families, there is an association of essential myoclonus, essential tremor, and even a form of dystonia, called myoclonus dystonia.
Another form of essential myoclonus may be a type of epilepsy with no known cause.
Palatal myoclonus is a regular, rhythmic contraction of one or both sides of the rear of the roof of the mouth, called the soft palate. These contractions may be accompanied by myoclonus in other muscles, including those in the face, tongue, throat, and diaphragm. The contractions are very rapid, occurring as often as 150 times a minute, and may persist during sleep. The condition usually appears in adults and can last indefinitely. Some people with palatal myoclonus regard it as a minor problem, although some occasionally complain of a "clicking" sound in the ear, a noise made as the muscles in the soft palate contract. The disorder can cause discomfort and severe pain in some individuals.
Progressive myoclonus epilepsy (PME) is a group of diseases characterized by myoclonus, epileptic seizures, and other serious symptoms such as trouble walking or speaking. These rare disorders often get worse over time and sometimes are fatal. Studies have identified many forms of PME. Lafora body disease is inherited as an autosomal recessive disorder, meaning that the disease occurs only when a child inherits two copies of a defective gene, one from each parent. Lafora body disease is characterized by myoclonus, epileptic seizures, and dementia (progressive loss of memory and other intellectual functions).
A second group of PME diseases belonging to the class of cerebral storage diseases usually involves myoclonus, visual problems, dementia, and dystonia (sustained muscle contractions that cause twisting movements or abnormal postures). Another group of PME disorders in the class of system degenerations often is accompanied by action myoclonus, seizures, and problems with balance and walking. Many of these PME diseases begin in childhood or adolescence.
Reticular reflex myoclonus is thought to be a type of generalized epilepsy that originates in the brain stem, the part of the brain that connects to the spinal cord and controls vital functions such as breathing and heartbeat. Myoclonic jerks usually affect the whole body, with muscles on both sides of the body affected simultaneously. In some people, myoclonic jerks occur in only a part of the body, such as the legs, with all the muscles in that part being involved in each jerk. Reticular reflex myoclonus can be triggered by either a voluntary movement or an external stimulus.
Stimulus-sensitive myoclonus is triggered by a variety of external events, including noise, movement, and light. Surprise may increase the sensitivity of the individual.
Sleep myoclonus occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some forms appear to be stimulus-sensitive. Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor."
http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm
I think you should bring this to the attention of your neurologist, it might be a secondary issue but it's very possibly lesion based and if it's new, even though your status has changed to SPMS you could very well be relapsing, so definitely worth talking to your neuro about it.
HUGS...........JJ
Very sorry for all your going through. My condolences on your loss. I'm not sure about the jerking movements. Did your neuro have any ideas about this? Re: your depression, it is understandable with all you're dealing with and may even be a symptom of your MS itself. I would consider exploring antidepressant treatment. Are you currently on a DMD? Some of them can cause depression as a side effect, or worsen depression due to other causes.
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