Totally Neuro Chaotic: 2.5 Years

[ListlessOne]

Hi everyone, been here for 2.5 years All started with unexplained seizures with autonomic symptoms (nausea, dizziness, etc). Then progressed to twitching and burning muscle pain which brought me here. Then I had calf atrophy. Then runs of bad heart palpitations. Then trigeminal and glossophyrangeal neuralgia. Who has all these neuro issues? Its like total neurological chaos. Now I wake up gasping for air. Just told obstructive sleep apnea. I was happy dr. didn't say central but then she said the *beep* awful thing: "Well, there are some neuro conditions that can cause throat muscles to relax." *beep*!Im a female, 120 lbs. No snoring noted on sleep study. This freaks me out now. I have been having throat pain and I think myoclonus in my roof of mouth. My tongue is fine and no slurring or choking Can this be the start of bulbar 2.5 years into this?? Does bulbar work that way with a starting up time period for a few years....? Just had my third limb EMG last week. Didn't EMG the face. I did have a ANSAR test done which shows autonomic dysfunction and having punch biopsy for small fiber. Would bulbar start with twitching in the muscles first for two years? Im done with this stuff. I can't live on the edge of health anxiety anymore, but these neuro punches keep coming. Im constantly in a state of "developing" something. Ugh.

 

[JuanitaPeralta]

I have everything you describe. I recommend reducing refined carbohydrates, such as grains and sugar. Grains are incompatible with human digestion because we lack the digestive apparatus of ruminants that allow their digestion. Further, elevated sugar and insulin inhibit absorption of essential nutrients. So, remember that before considering supplementation. Lastly, never ask how something starts because when MND starts it becomes very obvious very quickly. That's the best answer I can give you about MND.

 

[Gracer]

First of all, digestive apparatus of ruminants is adapted to feed on cellulose (which is a carbohydrate by nature), not on proteins contained in grains (cellulose is main component of stems and leaves they eat), that is why it has 4 cameras, alot of specific bacteria, and still ruminants manure is essentially non-changed grass (completely unlike to human's one). That is why ruminants need much more of food (and many of them spend most of their time on feeding). And please be convinced that if ruminants are excessively fed with grains (like oats or wheat grain or high protein meal, like soya or sunflower meal) they immediately develop various veterinary diseases, from laminitis to bloating - becasue THEIR GIT is not used for so much proteins contained in grains/soya/sunflower seeds. In order to consume proteins, ruminants need our help - they need proteins to be half-digested by other bacteria, and this is a protein feed known as ensilage.In fact, ability to digest grains, high on proteins and extremely low on cellulose, especially heat processed, was one of things which made us humans - it supplied us with more energy, let us be less dependent on territories, and provided other practical benefits Yep we do have some gluten related issues (there is still a room for evolution I think), but till the latest 200 years MOST OF POPULATION IN THE EUROPE were living on 1 kilo of bread or cereal (various kinds of porridge and kasha) and 5 liters of beer (ale) per day with occasional cheese/butter and liver and some legumes maybe, as potatoes started to spread actively only in the late 18 century), and humankind still was propsering and growing.So you may cut off your grains if you want but not becasue your guts are not used to digest it )) They are, believe me.as for sleep apnea, it happens in us due to sleep disorder and shifted sleep phases mostly (often as a result of stress). You may need sleep study and blood gases test maybe to check that. If it cenreal apnea by the way but caused by sleep phase shift. CSA is in fact NORMAL physiological condition, because when we are getting asleep, our breathig center also goes to 'auto' mode, and normally the shift is quite 'painless'. but if your blood gases are different from norm for some reason or is your central nervous system is hyperexcited, this phase is prolonged and you wake up gasping. Constant and stubborn CSA is in fact the reaason of shallow sleep or insomnia becasue some of us can have them in dozens per hour - every time we trying to get asleep, it wakes us up (not in such dramatic manner, but quite efficicently still). So My advice would be to get a sleep study and see what is going on. as for possibility to get bulbar onset after two years of twitching which was not ALS related, I would say it might be quite improbable. Bulbar onset itself (predominant lesion in the brainstem) is rare, and usually bulbar paralysis is a last stage of well developed ALS and the immediate reason of death in fact. So probably the only relation between long term twitches and CSA could be the same autonomous disorder we all suffer from (among the rest of syndrome).my neuro also told me 'there could be OTHER diseases causing twitches" and it cost me 1 year of fears. So I understnd you so good.

 

[JuanitaPeralta]

You don't have to take my word for it on grains. I've read extensively on the matter. Read the book, "Wheat Belly". Informed by cutting-edge science and nutrition, along with case studies from men and women who have experienced life-changing transformations in health after waving goodbye to wheat, Wheat Belly is an illuminating look at what is truly making people sick and an action plan to clear our plates of this seemingly benign ingredient.Source: Source:

 

[Gracer]

dear JuanitaPeralta,whatever is said in the book you mention, I have strong doubts that there is a single word in it regarding that ruminants eat grains and are specifically adopted to it they eat grass, leaves and stems. They process cellulose which we can not do (we maximum can eat starch, which is less polymerized carbohydrate) and it is not the best food for us). And they can not efficiently digest grains (one of the ways for cereals to sperqd is via the manure of ruminants becasue seeds are not digested). One of the easiets ways to get the horse heavily sick is to feed it a lot of oats (as a grain).If the book you mention welcomes versatile diet - I agree with it. But if it demonizes one of the basic components of the diet - I think it is the same unwise trend as it was with the eggs, butter and other animal fats because of cholesterol.

 

[JuanitaPeralta]

I remain as convinced as you do about the matter. My comment is not a mandate. I am merely suggesting an elimination diet. If it works, then it lends credence to my claims or at least confirms an adverse effect. I have Celiac Disease, so I can't defend grains.

 

[leroyblue]

You are a pre menopausal female afaik so that on it's own makes it highly unlikely you have mnd.

 

[ListlessOne]

I did have an at home sleep study - so somewhat legit. Dr. is pretty sure is obstructive. I have a long face, high arched palate, some other tongue and nose issues. Yet I focus on the negative!Anyway, as most of us do, I have found something else to obsess about. I have been having severe depression and anxiety lately. Like a restlessness in my stomach and like in my veins. Can't relax when I try. So of course that leads me to research and now I am convinced I have an early onset dementia called frontotemporal dementia. And of course its related to ALS. And then I did the bad thing and researched that its related to neurottoxicity. So now I am in this vicious circle. The hallmark of that disease is early onset behavioral and personality changes, not memory loss. So its soooo easy to fall into. I asked my neuro point blank and she was like "NO, you absolutely do not have it." And of course, Im like, well couldn't I be in the early stages of it.... Ive convinced myself that I am the atypical presentation. OMG I WANT MY LIFE BACK!! I HAVE THREE children I cannot be stuck in this joyless mess. Do you believe I made an appoitment with a neuropsychiatrist at a dementia clinic for after the holidays? I truly believe this rampant hypochondria will only stop when someone gives a name for my illness - this BFS or "we don't know but it won't kill you" answer is not enough when every nerve in your body has been misfiring. It all started with that darn unexplained seizure and Im scared. Would something neurodegenerative show up within 2.5 years or does it take all this agonizing time for it be made manifest? I could really use some talking to.

 

[SparkleKid]

Hey ListlessOne,I share many of the same symptoms as you. I know it's tough not having a name to put on our condition, but it's certainly not remotely close to ALS. You can take that to the bank. I asked my neurologist what to call this and he didn't have an answer. He believes it's either an autoimmune dysfunction or some sort of metabolic dysfunction perhaps caused by leaky gut. Honestly he's just guessing the though. I am scheduled to see a rheumatologist and endocrinologist in January. Not getting my hopes up on finding answers but I'll keep you updated on what is found. Lately I've have trouble with my ears feeling full like I have water in them. Weird sensation. Comes and goes. My diet change has helped with the nerve pain.