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Old 02-22-2012, 08:46 AM
janet staples janet staples is offline
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Join Date: Feb 2012
Location: chesapeake,va.
Posts: 6
10 yr Member
janet staples janet staples is offline
Junior Member
 
Join Date: Feb 2012
Location: chesapeake,va.
Posts: 6
10 yr Member
Default janet staples

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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"Thanks for this!" says:
bizi (02-22-2012)