Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 02-19-2012, 07:28 PM #1
JPGuinness JPGuinness is offline
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Confused MS or Multiple System Atrophy - really need comfort

First of all, I'm new here so I wanted to introduce myself and say that I really believe in patient-to-patient forums and the support they can provide.

Please read this and respond if anyone can provide any good info or, more so, some good news to calm my nerves.

Basically, I am a 32 yr/old male who has suffered from headaches, neuralgic pain and neck pain for the past 8 years or so. I learned to deal with it and pretty much get on w/ life. However, in October of last years, I started having very rare myoclonic jerks (muscle jerks similar to the ones you get before you doze off) and strange dizzy sensations when lying down (it felt like I was in a space shuttle going straight up when I was just lying upright in the bed watching TV.
I also had an episode of "brachial plexopathy" in October. I woke up and my right arm was completley paralyzed, only having movement in my hands and forearm. Within one month, full movement and strength came back, but I am having episodes of waking up in the middle of the night with my arm completely dead; I panic, beat it against the wall, shake it about, and it comes back to life within 10 minutes. I also have my hands and feet go tingly and numb ever day (and I've had this symptom for over a year, actually)

In December, the dizziness stopped, but the myoclonic jerking got much much worse - up to 20-30 jerks per day. These jerks are generalized and diffuse throughout my whole body -small finger jerks to full-body jerks. Numbness/tingling continued during this month.

For the last few weeks, it seems I have lost control of my bladder. I either have to pee 13 times a day, or I have really bad urinary retention and can't seem to empty my bladder at all. These symptoms shift back and forth, and I'd say I've had maybe 4-5 days in the past three weeks where my bladder seems to be at optimal/normal function.

I've had an EEG, a 24-hour ambulatory EEG, an MRI of my brain, cervical spine and lumbar spine. All came back only showing minor degenerative disc buldging with minimal foramenal (sp?) narrowing. There were no lesions or anything they could see that could account for my symptoms. My Neuro referred my to the Mayo Clinic and they took me right away (appt is in 3 weeks).

I'm in a state of complete panic and could really use some comfort here. I've read that urogenital symptoms are usually the first symptom of Multiple System Atrophy. Also, the MSA info states that small amplitude myoclonic jerks are also a hallmark of the disease in it's early state. The one thing I have going for me is that there has never been a pathologically proven case of MSA in a patient under 30, and I'm only 32 (average onset is 54)

I would like to ask all of you if this sounds like it could be MS (without lesions showing on MRI), or if this definitely looks like MSA? If I have MSA at this young age, it would be totally devastating and basically mean my life is over. This formidable prospect has me in a state of near complete incessant panic. Are there other conditions that can account for these symptoms? What can cause neurogenic bladder symptoms? At this point I'm praying for MS, as the alternatives are too scary to even think about.

I've read that people are very often misdiagnosed with idiopathic Parkinson's Disease when they actually have MSA; especially when urogenital symptoms predominate in early stages.

Are there other conditions that could account for my symptoms that are not quite so foreboding?

Any help is greatly appreciated. I hope everyone here has received some form of comfort from such great online resources as this.

TIA

J.P.
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Old 02-22-2012, 08:46 AM #2
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Quote:
Originally Posted by JPGuinness View Post
First of all, I'm new here so I wanted to introduce myself and say that I really believe in patient-to-patient forums and the support they can provide.

Please read this and respond if anyone can provide any good info or, more so, some good news to calm my nerves.

Basically, I am a 32 yr/old male who has suffered from headaches, neuralgic pain and neck pain for the past 8 years or so. I learned to deal with it and pretty much get on w/ life. However, in October of last years, I started having very rare myoclonic jerks (muscle jerks similar to the ones you get before you doze off) and strange dizzy sensations when lying down (it felt like I was in a space shuttle going straight up when I was just lying upright in the bed watching TV.
I also had an episode of "brachial plexopathy" in October. I woke up and my right arm was completley paralyzed, only having movement in my hands and forearm. Within one month, full movement and strength came back, but I am having episodes of waking up in the middle of the night with my arm completely dead; I panic, beat it against the wall, shake it about, and it comes back to life within 10 minutes. I also have my hands and feet go tingly and numb ever day (and I've had this symptom for over a year, actually)

In December, the dizziness stopped, but the myoclonic jerking got much much worse - up to 20-30 jerks per day. These jerks are generalized and diffuse throughout my whole body -small finger jerks to full-body jerks. Numbness/tingling continued during this month.

For the last few weeks, it seems I have lost control of my bladder. I either have to pee 13 times a day, or I have really bad urinary retention and can't seem to empty my bladder at all. These symptoms shift back and forth, and I'd say I've had maybe 4-5 days in the past three weeks where my bladder seems to be at optimal/normal function.

I've had an EEG, a 24-hour ambulatory EEG, an MRI of my brain, cervical spine and lumbar spine. All came back only showing minor degenerative disc buldging with minimal foramenal (sp?) narrowing. There were no lesions or anything they could see that could account for my symptoms. My Neuro referred my to the Mayo Clinic and they took me right away (appt is in 3 weeks).

I'm in a state of complete panic and could really use some comfort here. I've read that urogenital symptoms are usually the first symptom of Multiple System Atrophy. Also, the MSA info states that small amplitude myoclonic jerks are also a hallmark of the disease in it's early state. The one thing I have going for me is that there has never been a pathologically proven case of MSA in a patient under 30, and I'm only 32 (average onset is 54)

I would like to ask all of you if this sounds like it could be MS (without lesions showing on MRI), or if this definitely looks like MSA? If I have MSA at this young age, it would be totally devastating and basically mean my life is over. This formidable prospect has me in a state of near complete incessant panic. Are there other conditions that can account for these symptoms? What can cause neurogenic bladder symptoms? At this point I'm praying for MS, as the alternatives are too scary to even think about.

I've read that people are very often misdiagnosed with idiopathic Parkinson's Disease when they actually have MSA; especially when urogenital symptoms predominate in early stages.

Are there other conditions that could account for my symptoms that are not quite so foreboding?

Any help is greatly appreciated. I hope everyone here has received some form of comfort from such great online resources as this.

TIA

J.P.
I also have been recently been diagnosis. I am a 61 year old female. I have many of yur symptoms and it sounds that you may be very early in the stage which iis good. I was devasstated but after medications to control the symptoms I feel much more positive. I suggest you do everything the doctors recommend and don't try to fix things on your own. There are some things I don't do any longer but I exercise, ride my bike daily. You too will find your limitations. After leearning more I don't feel it is a death sentence.

Stay calm

Janet:
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Old 02-27-2012, 11:15 AM #3
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Default Msa

Janet Staples
I am a 61 year old female who was a teacher for 38 years, played college basketball, softball, field hockey and ran marathons. About 10 years ago I noticed I was tripping, falling, had tremors in my right hand and memory loss. After testing it was contributed to stress and depression. The tremors and memory loss got worse and in 2010 I had two car accidents within a month and really don't kn...ow what happened. They started testing again. They wouldn't let me drive so i started riding my bike and one day a couple found me on the side of a bike bath unconscious. After a tilt test they determined I had the condition where your blood pressure drops suddenly. With medication this has improved. I take medication for the tremors but still have times and my handwriting is poor. Nothing like when I was teaching. I do think stress had a lot to do with the severity of my symptoms.
They did a MRI and found I had atrophy of the brain. They retested my memory and cognitive and it had declined. This is when they said it was MSA. Like everyone else I had never heard of it and after some research I wish I never had. I was having difficulty swallowing so they did several test and it showed a hyenal hernia, acid reflux and silent aspiration. I began noticing my voice was raspy and it has gotten worse. I am now starting speech theraphy. Sometimes I feel I am not sick at all but after reading alot about MSA I feel they may be right. The most recent feeling is the skin on my arms at times feels like it is burning, does anyone have this symptom. If anyone can respond too my concerns I would appreciate it because I am in denial at sometimes. My husband wants to start doing things while we can and I agree if it is true, but not sure

janet
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Old 02-27-2012, 06:04 PM #4
rbwalton rbwalton is offline
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Hi JP
Well, there are other things to think about that may be part of what is happening to you. You mentioned brachial plexopathy. Related to that, there is something called Parsonage Turner Syndrome, or a better term may be Neuralgic Amyotrophy, which takes into account most of the symptoms you mentioned- except maybe the bladder issues. As this goes on, you can develop numbness, weakness or periods of not being able to move certain things depending on which nerves are impacted at the time. Some twitches are possible. It can impact balance, so dizziness is also possible. Headaches and neck pain are part of it. It can impact about every plexus site from lower cranial nerves to lumbar-sacral plexus. Have you had any very intense pain other than headaches? It is something else to consider. Jerks you describe could also be related to restless leg syndrome. I find that taking supplements of magnesium and DHEA help tremendously with my muscle jerks.




Quote:
Originally Posted by JPGuinness View Post
First of all, I'm new here so I wanted to introduce myself and say that I really believe in patient-to-patient forums and the support they can provide.

Please read this and respond if anyone can provide any good info or, more so, some good news to calm my nerves.

Basically, I am a 32 yr/old male who has suffered from headaches, neuralgic pain and neck pain for the past 8 years or so. I learned to deal with it and pretty much get on w/ life. However, in October of last years, I started having very rare myoclonic jerks (muscle jerks similar to the ones you get before you doze off) and strange dizzy sensations when lying down (it felt like I was in a space shuttle going straight up when I was just lying upright in the bed watching TV.
I also had an episode of "brachial plexopathy" in October. I woke up and my right arm was completley paralyzed, only having movement in my hands and forearm. Within one month, full movement and strength came back, but I am having episodes of waking up in the middle of the night with my arm completely dead; I panic, beat it against the wall, shake it about, and it comes back to life within 10 minutes. I also have my hands and feet go tingly and numb ever day (and I've had this symptom for over a year, actually)

In December, the dizziness stopped, but the myoclonic jerking got much much worse - up to 20-30 jerks per day. These jerks are generalized and diffuse throughout my whole body -small finger jerks to full-body jerks. Numbness/tingling continued during this month.

For the last few weeks, it seems I have lost control of my bladder. I either have to pee 13 times a day, or I have really bad urinary retention and can't seem to empty my bladder at all. These symptoms shift back and forth, and I'd say I've had maybe 4-5 days in the past three weeks where my bladder seems to be at optimal/normal function.

I've had an EEG, a 24-hour ambulatory EEG, an MRI of my brain, cervical spine and lumbar spine. All came back only showing minor degenerative disc buldging with minimal foramenal (sp?) narrowing. There were no lesions or anything they could see that could account for my symptoms. My Neuro referred my to the Mayo Clinic and they took me right away (appt is in 3 weeks).

I'm in a state of complete panic and could really use some comfort here. I've read that urogenital symptoms are usually the first symptom of Multiple System Atrophy. Also, the MSA info states that small amplitude myoclonic jerks are also a hallmark of the disease in it's early state. The one thing I have going for me is that there has never been a pathologically proven case of MSA in a patient under 30, and I'm only 32 (average onset is 54)

I would like to ask all of you if this sounds like it could be MS (without lesions showing on MRI), or if this definitely looks like MSA? If I have MSA at this young age, it would be totally devastating and basically mean my life is over. This formidable prospect has me in a state of near complete incessant panic. Are there other conditions that can account for these symptoms? What can cause neurogenic bladder symptoms? At this point I'm praying for MS, as the alternatives are too scary to even think about.

I've read that people are very often misdiagnosed with idiopathic Parkinson's Disease when they actually have MSA; especially when urogenital symptoms predominate in early stages.

Are there other conditions that could account for my symptoms that are not quite so foreboding?

Any help is greatly appreciated. I hope everyone here has received some form of comfort from such great online resources as this.

TIA

J.P.
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Old 09-10-2013, 03:28 PM #5
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Default Another possibility

could be Ehlers-Danlos Hypermobility, which can cause brain stem compression, which triggers all manner of neurological weirdness, including the symptoms you mentioned.
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Old 01-13-2014, 05:07 PM #6
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Default Response to Janet and info. On MSA

Quote:
Originally Posted by janet staples View Post
Janet Staples
I am a 61 year old female who was a teacher for 38 years, played college basketball, softball, field hockey and ran marathons. About 10 years ago I noticed I was tripping, falling, had tremors in my right hand and memory loss. After testing it was contributed to stress and depression. The tremors and memory loss got worse and in 2010 I had two car accidents within a month and really don't kn...ow what happened. They started testing again. They wouldn't let me drive so i started riding my bike and one day a couple found me on the side of a bike bath unconscious. After a tilt test they determined I had the condition where your blood pressure drops suddenly. With medication this has improved. I take medication for the tremors but still have times and my handwriting is poor. Nothing like when I was teaching. I do think stress had a lot to do with the severity of my symptoms.
They did a MRI and found I had atrophy of the brain. They retested my memory and cognitive and it had declined. This is when they said it was MSA. Like everyone else I had never heard of it and after some research I wish I never had. I was having difficulty swallowing so they did several test and it showed a hyenal hernia, acid reflux and silent aspiration. I began noticing my voice was raspy and it has gotten worse. I am now starting speech theraphy. Sometimes I feel I am not sick at all but after reading alot about MSA I feel they may be right. The most recent feeling is the skin on my arms at times feels like it is burning, does anyone have this symptom. If anyone can respond too my concerns I would appreciate it because I am in denial at sometimes. My husband wants to start doing things while we can and I agree if it is true, but not sure

janet
Hi Janet,
I am afraid that your condition does sound like MSA. My dad has this very rare disease also. The diagnosis was confirmed as MSA when his blood pressure started to fluctuate drastically. They take your blood pressure while laying down, wait three minutes- then take it when sitting up- wait three minutes- then take it again while standing up. The looks on the medical people's faces is just astonishment. His blood pressure changes so drastically. Even just lifting his arm makes it change drastically.

We are just starting to see how severe this disease is. My dad became totally paralyzed a few days ago. Can't swallow. We are having to make a decision about a feeding tube. I am so depressed and sad.

His voice getting raspy and very soft was also a sign. The earliest noticeable symptom was him having REM sleep behavior disorder. This is a precursor to Parkinson's disease or MSA. I also have the REM sleep behavior disorder and am having episodes of paralysis. I am crippled and really scared that I also have this disease. I have an appointment with the neurologist who diagnosed my dad on the 20th. I just want some answers at this point. I live in chronic pain and can barely dress myself. Yet I keep getting denied for disability benefits so I really need a diagnosis.

I have watched what he has gone through and my symptoms are exactly the same as his were in the earlier stages.
This disease comes with cognitive and neurological impairment. It has a sort of dementia with it. So yeah- it effects your memory etc. I think we both have hallucinations at times. I know I do. He also started to think things that were not real. Like- thinking my mom was having an affair on him and other strange things.

These 'episodes' seem to come and go. Bad days and better days. Bad weeks and then a little better for a while.

One of the big things that my dad has that I do not have (yet at least) is a really humped back and leaned forward posture with shuffling type walking.
He also can't regulate his body temperature and is always freezing. He wears a down coat in summer.

I also get a burning feeling in my arms at times. Like my blood is on fire. I have never heard of him complain of this but he never says much and just can't seem to describe or tell what he is going through. He has become really 'out of it'.

If you think you have this disease- your husband is right- you need to get out and do things while you can. Good luck to you Janet. I wish you the best and will keep you in my prayers. God Bless.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 02-25-2014, 09:07 PM #7
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I am sorry to hear about your problem at this young age. I would suggest you something because I am suffering of the same. There are some differences, though. I am 56. I was diagnosed Parkinson's in 2013. I had a history of epilepsy.

I also went for second opinion. I had read that Parkinson's and MSA are often misdiagnosed. My other doctor got some tests done again, brain MRI, urological tests, and based on symptoms and history (about my Parkinson's treatment), he could confirmed the MSA.

Please don't hesitate to go for second opinion to ensure that you are not wasting time for treatment.

My symptoms are slow progressing and i have to face that, I hope, you get a perfect diagonals and hopefully you do not have any major problem.

My best wishes are with you














Quote:
Originally Posted by JPGuinness View Post
First of all, I'm new here so I wanted to introduce myself and say that I really believe in patient-to-patient forums and the support they can provide.

Please read this and respond if anyone can provide any good info or, more so, some good news to calm my nerves.

Basically, I am a 32 yr/old male who has suffered from headaches, neuralgic pain and neck pain for the past 8 years or so. I learned to deal with it and pretty much get on w/ life. However, in October of last years, I started having very rare myoclonic jerks (muscle jerks similar to the ones you get before you doze off) and strange dizzy sensations when lying down (it felt like I was in a space shuttle going straight up when I was just lying upright in the bed watching TV.
I also had an episode of "brachial plexopathy" in October. I woke up and my right arm was completley paralyzed, only having movement in my hands and forearm. Within one month, full movement and strength came back, but I am having episodes of waking up in the middle of the night with my arm completely dead; I panic, beat it against the wall, shake it about, and it comes back to life within 10 minutes. I also have my hands and feet go tingly and numb ever day (and I've had this symptom for over a year, actually)

In December, the dizziness stopped, but the myoclonic jerking got much much worse - up to 20-30 jerks per day. These jerks are generalized and diffuse throughout my whole body -small finger jerks to full-body jerks. Numbness/tingling continued during this month.

For the last few weeks, it seems I have lost control of my bladder. I either have to pee 13 times a day, or I have really bad urinary retention and can't seem to empty my bladder at all. These symptoms shift back and forth, and I'd say I've had maybe 4-5 days in the past three weeks where my bladder seems to be at optimal/normal function.

I've had an EEG, a 24-hour ambulatory EEG, an MRI of my brain, cervical spine and lumbar spine. All came back only showing minor degenerative disc buldging with minimal foramenal (sp?) narrowing. There were no lesions or anything they could see that could account for my symptoms. My Neuro referred my to the Mayo Clinic and they took me right away (appt is in 3 weeks).

I'm in a state of complete panic and could really use some comfort here. I've read that urogenital symptoms are usually the first symptom of Multiple System Atrophy. Also, the MSA info states that small amplitude myoclonic jerks are also a hallmark of the disease in it's early state. The one thing I have going for me is that there has never been a pathologically proven case of MSA in a patient under 30, and I'm only 32 (average onset is 54)

I would like to ask all of you if this sounds like it could be MS (without lesions showing on MRI), or if this definitely looks like MSA? If I have MSA at this young age, it would be totally devastating and basically mean my life is over. This formidable prospect has me in a state of near complete incessant panic. Are there other conditions that can account for these symptoms? What can cause neurogenic bladder symptoms? At this point I'm praying for MS, as the alternatives are too scary to even think about.

I've read that people are very often misdiagnosed with idiopathic Parkinson's Disease when they actually have MSA; especially when urogenital symptoms predominate in early stages.

Are there other conditions that could account for my symptoms that are not quite so foreboding?

Any help is greatly appreciated. I hope everyone here has received some form of comfort from such great online resources as this.

TIA

J.P.
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Old 10-02-2015, 01:38 AM #8
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MSA sucks. I am lucky I suppose in that I actually work for Disability Employment Service provider..hey if they can't keep me working as long as possible...who can?
I'm just afraid that I am degenerating faster than friends and family realise. Perhaps they think they are cheering me up by pretending things are not as bad as they are.
I'm not looking forward to the end, not for me, but I don't want my daughter to see me when I can no longer look after myself. She turned 8 just the other day.
I wonder how many more of her birthdays I will see?
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Old 10-02-2015, 02:15 AM #9
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I'm very sorry.
That must be so very awful for you and especially with your daughter being so young. That obviously means you are very young as well?

I guess family and friends may be not wanting to face the reality of your illness and that's their way of trying to help. Even though you have your family and friends for support, I was wondering if you see a counsellor who you can talk to about your feelings. I lost my parents very young from other reasons, but 8 year olds understand a heck of a lot more than people realize and in an age appropriate way, she also needs guidance and a certain type of preparation for what is to come.

You take care there.
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Old 10-03-2015, 09:44 PM #10
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Quote:
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I'm very sorry.
That must be so very awful for you and especially with your daughter being so young. That obviously means you are very young as well?

I guess family and friends may be not wanting to face the reality of your illness and that's their way of trying to help. Even though you have your family and friends for support, I was wondering if you see a counsellor who you can talk to about your feelings. I lost my parents very young from other reasons, but 8 year olds understand a heck of a lot more than people realize and in an age appropriate way, she also needs guidance and a certain type of preparation for what is to come.

You take care there.
Hi Janet,
Not so young really. 56 now 55 when first properly diagnosed after a couple of years of being told my symptoms were psychosomatic. (classic age for MSA)
Had my daughter later in life when I remarried. (Best thing I ever did...she brings me so much joy)
I had always said I would not be on old father. My father was older and I always said I would never do that to a kid. I have and I am so glad I did.
I am not seeing a therapist. As I said, work have been fantastic and offered me or anyone in my family access to one. Psychologically I am going OK, although I do find myself googling Australian euthanasia laws from time to time. I'm ok now but I am worried about those around me at the end (euthanasia Illegal in Australia)
She (Daughter) knows my balance and speech will never get better.
Thanks for the kind words.
I'll just keep taking one day at a time.
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