Sleep attack with loss of balance and dysphasia

Posted by poojerrt @poojerrt, Nov 20, 2017

For the past 3+ years I have been experiencing what I call sleep attacks. These are not narcoleptic in nature, are associated with slurred, slow, speech, and cause a loss of balance that makes me walk with my feet apart like a drunk to compensate. I feel a sudden overwhelming desire to sleep I cannot resist. I know I have a few minutes to pull over and park or make coffee for morning and brush my teeth before I have to close my eyes and give in. Last evening (usually but not always in the evening), it hit me about 8:30, I was out by 8:40 and then woke up at midnight unable to go back to sleep. I’ve seen a neurologist who tested ,e for MS, Myasthenia Gravis and other neuromuscular disorders and found nothing except neuropathy on the bottom of my feet. I feel ,Ike I’m walking on paper all the time tho, not just when I have a sleep attack. I’m a retired RN and have researched everything from narcolepsy to brain tumors to sleep wake disorders and nothing fits. What is this?

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JK | @contentandwell | Nov 20, 2017

@poojerrt This really is perplexing. I hope you can find out the reason for this fairly soon.
If you have not been seen by someone at a major medical center I suggest you try that. I went way too long with no diagnosis up here near Manchester NH. If I ever go a long time again with no diagnosis I will head right down to Boston. I ended up going there anyway but I spent almost a year and half not knowing what was wrong with me.
JK

Lisa Lucier, Moderator | @lisalucier | Nov 20, 2017

Hi, @poojerrt --sounds frustrating going through all these tests, research and overwhelming desire to sleep, without a concrete diagnosis.

Others who have talked about sleep challenges may have some insights for you, like @anon56837187, @jimhd, @sarahe, @sandytoes14, @oldkarl and @ryman. Hope you can all meet up here in this discussion.

You mentioned the doctor ruled out MS and Myasthenia Gravis and some others. What other disorders were ruled out at this point?

Jim, Volunteer Mentor | @jimhd | Nov 20, 2017

@poojerrt

You certainly have me stumped! I assume you've had all of the appropriate imaging studies, blood assessments, ENT doctors, etc. Isn't it amazing how many different possibilities are out there? ! I've had many of the same tests you have, and like you, I'm not done yet. The neurologist has suggested I see a specialist who combines neurology with nasopharyngeal medicine. I need to pursue that one.

I hope you (and I) find the answers.

Jim

oldkarl | @oldkarl | Nov 21, 2017

@poojerrt Hi, Poo... I know some folks get a little tired of my insistence, but I have six sisters and one brother. All but two of us have the same symptoms you have... sleeplessness, stumbling, myriad attempts at diagnosis. All but two of us use CPAP (Constant Positive Airway Pressure, I think it is). One sister has died, her daughter has died, and others have protein deposits in the brain and other forms of dementia, as well as various primary and systemic issues in nerves, heart, liver, kidneys, pancreas, etc.. Why? Now we know. We have some form of Amyloidosis, probably AL, ACys or hATTRwt. There are many forms of Amyloidosis, including Multiple Myeloma, Parkinsons, Huntington, Gelsolin, etc. I have a list in my story. The first test is simple and cheap. A Bindings SERUM FreeLiteChain(c) assay, together with a couple forms of 24-hour urine protein assays. Boston is a great place to check it out at Brigham and Women's, Mass General, or whatever. They have the equipment and the experience. And there is medication coming soon to the market that CAN be effective. Look up Amyloidosis on Mayo, City of Hope, Alnylam, etc. And read my personal story at https://bit.Ly/1w7j4j8 I am not selling anything, and you can get my story free.