Aa
Digestive issues for 2 years. 140lb down to 90lb
Hello my name is Ryan I'm 31 years old I don't drink, smoke, use drugs or engage in alternative lifestyles. I'm just a simple guy from a small Texas town and I live a very quiet life. I've been fighting a mystery condition for two years. I've been to many doctors I've had many tests ran and lots of things have been uncovered, but I still do not have a clear diagnosis and I don't know where to go or who to turn to.
Instead of writing a novel I'm going to keep my initial post short and I'm going to withhold information at first so I don't influence your responses. I'm going to list the symptoms I'm experiencing right now and I'd like for you to give me your first impression. I'll explain things and answer questions as we go.
Note: This came from absolutely no where. August 1st, 2013 I was just fine, but by August 31st, 2013 I was fighting for my life and still am. There has been no improvement.
Current Symptoms - 9/8/2015
▪Flu like symptoms
▪Swollen sore tonsils
▪Tonsil stones
▪Red sores in mouth
▪Blood blisters in mouth
▪Swollen lymph nodes
▪Twitchy muscles
▪Weaknesses
▪Painful tendons
▪Difficulty breathing
▪Heart palpitations
▪Dark green stools (no green food is being ingested)
▪Constipation (Drinking lots of water and juice)
▪Cloudy urine with particles
▪Rashes
▪Hair loss on legs
▪Cold legs and ice feet
▪Purple toes
▪Sores on legs
▪Low blood sugar
▪Numbness
▪Dizziness
▪Sore bones
▪Sore joints
▪Food Allergies (that came from no where)
▪Abdominal pain/pressure/discomfort (right side just under the ribs near the sternum and it seems to worsen after some meals, but moving around makes it worse too).
I went from being an active young man taking care of a farm to being bound to a bed for two years. There's more to the story, but this is a good start.
Instead of writing a novel I'm going to keep my initial post short and I'm going to withhold information at first so I don't influence your responses. I'm going to list the symptoms I'm experiencing right now and I'd like for you to give me your first impression. I'll explain things and answer questions as we go.
Note: This came from absolutely no where. August 1st, 2013 I was just fine, but by August 31st, 2013 I was fighting for my life and still am. There has been no improvement.
Current Symptoms - 9/8/2015
▪Flu like symptoms
▪Swollen sore tonsils
▪Tonsil stones
▪Red sores in mouth
▪Blood blisters in mouth
▪Swollen lymph nodes
▪Twitchy muscles
▪Weaknesses
▪Painful tendons
▪Difficulty breathing
▪Heart palpitations
▪Dark green stools (no green food is being ingested)
▪Constipation (Drinking lots of water and juice)
▪Cloudy urine with particles
▪Rashes
▪Hair loss on legs
▪Cold legs and ice feet
▪Purple toes
▪Sores on legs
▪Low blood sugar
▪Numbness
▪Dizziness
▪Sore bones
▪Sore joints
▪Food Allergies (that came from no where)
▪Abdominal pain/pressure/discomfort (right side just under the ribs near the sternum and it seems to worsen after some meals, but moving around makes it worse too).
I went from being an active young man taking care of a farm to being bound to a bed for two years. There's more to the story, but this is a good start.
Here in the United States coffee is second only to soda as the most popular beverage of choice. In the southern United States it isn't uncommon for children to drink coffee, but especially today with the rise of establishments like Starbucks and all of their sweet treat like coffees with vanilla, caramel, and chocolatey goodness.
My entire family is big on coffee. I can remember getting up on the countertop early in the morning when I was 7 and setting up the coffee machine myself. It quickly became my primary beverage second to Dr. Pepper or Pepsi. This caught up with me much later on in high school in 2000 my kidneys hurt bad because I wasn't drinking any water. Just coffee and soda. I did make a few changes by switching to caffeine free Sprite, POWERADE, and of course water.
In those days I ate just like everyone else. Breakfast, lunch and dinner. Only with a lot of coffee in between meals. Over the years I did reduce the sugar intake by only putting in 3 scoops of sugar per cup of coffee, but with as many cups as I was drinking it was still a lot of sugar. I'm surprised I'm not a diabetic, which hasn't been ruled out yet.
In 2009 after trips to the dentist I decided to quit drinking coffee. I quit cold turkey and haven't had any coffee since. That's when my snack food eating went off the charts. Snack cakes, creme filled cookies, Reese's Peanut Butter Cups, cake, doughnuts, brownies, and ice cream all day every day in between breakfast, lunch, and dinner. I literally ate nonstop.
Note: I barely gained weight through all of that going from 124lb in 2004 to 140lb by 2012.
As an adult and being more aware of medical conditions I have always thought I had something wrong with my metabolism. Some things just not right especially considering how rapid my weight loss was when I got to where I couldn't eat.
I do believe I will benefit the most by finding a holistic practitioner and seeking treatment for adrenal fatigue. I also need to be tested for parasites and fungal overgrowth and get treatments for those . I also need to have my skull looked at by someone competent.
I've taken down lots of notes from your posts Niko. I'm sure you're closer to pointing me in the right direction to get answers than any of the doctors I've been to.
I'll move forward with a plan and I'll post updates here when available.
Thanks for all the suggestions!
Ryan
My entire family is big on coffee. I can remember getting up on the countertop early in the morning when I was 7 and setting up the coffee machine myself. It quickly became my primary beverage second to Dr. Pepper or Pepsi. This caught up with me much later on in high school in 2000 my kidneys hurt bad because I wasn't drinking any water. Just coffee and soda. I did make a few changes by switching to caffeine free Sprite, POWERADE, and of course water.
In those days I ate just like everyone else. Breakfast, lunch and dinner. Only with a lot of coffee in between meals. Over the years I did reduce the sugar intake by only putting in 3 scoops of sugar per cup of coffee, but with as many cups as I was drinking it was still a lot of sugar. I'm surprised I'm not a diabetic, which hasn't been ruled out yet.
In 2009 after trips to the dentist I decided to quit drinking coffee. I quit cold turkey and haven't had any coffee since. That's when my snack food eating went off the charts. Snack cakes, creme filled cookies, Reese's Peanut Butter Cups, cake, doughnuts, brownies, and ice cream all day every day in between breakfast, lunch, and dinner. I literally ate nonstop.
Note: I barely gained weight through all of that going from 124lb in 2004 to 140lb by 2012.
As an adult and being more aware of medical conditions I have always thought I had something wrong with my metabolism. Some things just not right especially considering how rapid my weight loss was when I got to where I couldn't eat.
I do believe I will benefit the most by finding a holistic practitioner and seeking treatment for adrenal fatigue. I also need to be tested for parasites and fungal overgrowth and get treatments for those . I also need to have my skull looked at by someone competent.
I've taken down lots of notes from your posts Niko. I'm sure you're closer to pointing me in the right direction to get answers than any of the doctors I've been to.
I'll move forward with a plan and I'll post updates here when available.
Thanks for all the suggestions!
Ryan
Hey Niko thanks for getting back with me and I apologize for the delay in getting back to you. Let me cover the head injury and then cover everything else in separate post.
The head injury occurred in the summer of 2002 (17 y/o). It happened on the farm as I was helping my father build the fabrication shop. He was on the second floor and I was on the bottom floor when it happened so he didn't see it. I was down stairs preparing roofing materials and when I finished I ran through the shop and was just going to jump out the bay door. The problem is I didn't know my dad had affixed a downward hanging board to help secure the cat walk for the second story. I ran, jumped, and slammed the back of my head into that board at full forward speed (I was looking down and that's how I hit the back of my head). I instantly fell to the ground and was dizzy. It caused me to lose my vision for a moment. First turning solid black then turning solid white. My dad yelled "What the **** was that?!" and... 'I told him I just hit my head!' He said "there's no way that was you hitting your head because the entire second story of the shop shook!" then he said "if that was you hitting your head I would have come down to find you laying in the ground dead with blood everywhere."
My mom wasn't there. My parents were divorced (since 1995) and at the time I was staying with my dad for summer break. I was never taken to the hospital for an evaluation because my dad never believed that loud boom that shook the second story of the shop was me hitting my head. He said "well, you're up walking around and there's no blood so obviously you're OK" and that was that.
A few months later when back in school I began noticing I was having Involuntary muscle movement and speech issues, but I didn't really feel concerned about it. Until 2004 when I began having trouble walking, speech issues, trouble with balance and memory. That's when I first started going to see doctors. At first they thought I may have had a stroke because my symptoms were that bad. Then the beginning of a nightmare began when doctors started trying to diagnose me with an anxiety disorder based on elevated heart rate, high blood pressure, and shaky hands. My fingers move on their own. They twitch left or right. Sometimes my hand will suddenly open while I'm holding something. I began dropping things and having trouble using my hands in 2004. I lost the ability to draw, play guitar and the piano.
Involuntary muscle movements occur in my fingers, hand, feet, legs, eyes, and even my neck, which will cause me to suddenly jerk my head back. This is why I do not drive because the sudden movements make it too dangerous and I would not be able to maintain control of a vehicle. Me using the tractor on the farm is dangerous enough. Besides, something has gone wrong with my vision and corrective lenses do not help. I have trouble making out detail especially in low lit conditions because there's something in my vision obstructing my view and it started right after I hit my head. It looks kind of like TV static and in dark conditions it actually 'glows' bright enough that I'm not able to see the stars in the sky at night or see where I'm walking. Through all of my research the only condition that even remotely sounds like what's happening with my vision is something that happens to diabetics with out-of-control diabetes.
Sometimes I get this really weird sensation on the back of my head right where I hit my head. It's indescribable, but whenever that's happening I have a spike in cognitive issues.
I've mentioned this to more than 20 doctors from 2004 to 2015. I'll tell them about the head injury and then I'll cover all of my pre 2013 symptoms. They'll listen to all of that and then start trying to talk to me about anxiety and they'll give me a prescription for anxiety medication before sending me on my way. No tests no nothing. They want this to be mental health related so bad they're just flat out ignoring everything I say. You can touch the back of my skull and feel where the bones have been remodeled. It's an indent that feels about 3mm deep spanning across the back of my skull exactly where I hit. Its very distinctive. Any time I offer for a doctor to feel my skull they decline and simply say "oh, that's not necessary" as they proceed to write me a script for anxiety medication. It's frustrating to say the least.
I'll make another post about caffeine and sugar.
Thanks,
Ryan
The head injury occurred in the summer of 2002 (17 y/o). It happened on the farm as I was helping my father build the fabrication shop. He was on the second floor and I was on the bottom floor when it happened so he didn't see it. I was down stairs preparing roofing materials and when I finished I ran through the shop and was just going to jump out the bay door. The problem is I didn't know my dad had affixed a downward hanging board to help secure the cat walk for the second story. I ran, jumped, and slammed the back of my head into that board at full forward speed (I was looking down and that's how I hit the back of my head). I instantly fell to the ground and was dizzy. It caused me to lose my vision for a moment. First turning solid black then turning solid white. My dad yelled "What the **** was that?!" and... 'I told him I just hit my head!' He said "there's no way that was you hitting your head because the entire second story of the shop shook!" then he said "if that was you hitting your head I would have come down to find you laying in the ground dead with blood everywhere."
My mom wasn't there. My parents were divorced (since 1995) and at the time I was staying with my dad for summer break. I was never taken to the hospital for an evaluation because my dad never believed that loud boom that shook the second story of the shop was me hitting my head. He said "well, you're up walking around and there's no blood so obviously you're OK" and that was that.
A few months later when back in school I began noticing I was having Involuntary muscle movement and speech issues, but I didn't really feel concerned about it. Until 2004 when I began having trouble walking, speech issues, trouble with balance and memory. That's when I first started going to see doctors. At first they thought I may have had a stroke because my symptoms were that bad. Then the beginning of a nightmare began when doctors started trying to diagnose me with an anxiety disorder based on elevated heart rate, high blood pressure, and shaky hands. My fingers move on their own. They twitch left or right. Sometimes my hand will suddenly open while I'm holding something. I began dropping things and having trouble using my hands in 2004. I lost the ability to draw, play guitar and the piano.
Involuntary muscle movements occur in my fingers, hand, feet, legs, eyes, and even my neck, which will cause me to suddenly jerk my head back. This is why I do not drive because the sudden movements make it too dangerous and I would not be able to maintain control of a vehicle. Me using the tractor on the farm is dangerous enough. Besides, something has gone wrong with my vision and corrective lenses do not help. I have trouble making out detail especially in low lit conditions because there's something in my vision obstructing my view and it started right after I hit my head. It looks kind of like TV static and in dark conditions it actually 'glows' bright enough that I'm not able to see the stars in the sky at night or see where I'm walking. Through all of my research the only condition that even remotely sounds like what's happening with my vision is something that happens to diabetics with out-of-control diabetes.
Sometimes I get this really weird sensation on the back of my head right where I hit my head. It's indescribable, but whenever that's happening I have a spike in cognitive issues.
I've mentioned this to more than 20 doctors from 2004 to 2015. I'll tell them about the head injury and then I'll cover all of my pre 2013 symptoms. They'll listen to all of that and then start trying to talk to me about anxiety and they'll give me a prescription for anxiety medication before sending me on my way. No tests no nothing. They want this to be mental health related so bad they're just flat out ignoring everything I say. You can touch the back of my skull and feel where the bones have been remodeled. It's an indent that feels about 3mm deep spanning across the back of my skull exactly where I hit. Its very distinctive. Any time I offer for a doctor to feel my skull they decline and simply say "oh, that's not necessary" as they proceed to write me a script for anxiety medication. It's frustrating to say the least.
I'll make another post about caffeine and sugar.
Thanks,
Ryan
OK now this starts making some sense.
Massive Head Injury.
Never treated, never assessed? Your mom was nurse at the time?
IGF-1 test for low Growth Hormone. Very important !
Deficiencies in this hormone are especially common in patients with moderate to severe traumatic brain injury.
Growth Hormone has many important roles, one of them pertinent to you
is its remarkable function to increase the number of receptors for ALL hormones, throughout the body, thus increasing the body's sensitivity to these hormones, which is particularly useful to prevent the damaging effects of their deficiencies.
It also promotes the regeneration of nerve tissue and it helps extend the longevity of damaged neurons.
Your symptoms are consistent with unresolved hormonal deficiencies.
Caffeine Abuse has multiple negative systemic effects on the neuropsychiatric, cardiovascular, endocrine, and gastrointestinal systems,
increasing the risk of bone loss ( also in teeth)
Some possible symptoms :
Chest pain
Irregular heart beat
Mood swings
Nausea
Tremors
Insomnia
Anxiety
Stomach pain
Rapid respiratory rate
Severe headaches
Blurred vision
Vomiting
Hallucinations
Seizures
Liver/Kidney damage
Chronic mood swings
Blackouts
Memory loss.
Where were your parents/ guardians, when you were 7 years old?
And all that sugar everyday? It's a miracle you're still alive with all that caffeine and sugar that entered your body and your brain!
I took a look at some of your photos, which show some of the effects of all this from the outside.
No, you should stop looking for another diagnosis, with the hope of a specific treatment for it.
Don't concern yourself with people not posting more stuff at this point,
-no disrespect to other posters- but you risk getting information overload
and drowning in a sea of suggestions, suspicions and ideas and not be able to do anything with it!
It's time now to detox, to cleanse, to rebalance, to correct deficiencies, to repair your leaky gut, to eliminate candida,to treat your adrenal fatigue.
You have a small window of opportunity to get this done, before any serious organ involvement.
Use the internet and start a fundraiser.You don't need big money to consult with a reputable Holistic Practitioner or Functional Medicine Doctor who have experience in G/I Digestive and Adrenal/Endocrine issues.
Please give my advice serious consideration.
There's no miracle approach, no wonder drug or therapy, no Dr House,
only a step by step long-term comprehensive natural and holistic treatment plan, facilitated by a practitioner, as I mentioned above.
You have some homework to do, with tons of information to shift through,
research on your own and put it all together.
Recovery will take a very long time (eg to eliminate candida you must be on anti-candida program for 1-2 months per year of candida, whose symptoms btw do not show up for years! , adrenal fatigue stage 2B
about 6 months to 2 years, stage 3 longer)
Wishing you well.
Niko
Massive Head Injury.
Never treated, never assessed? Your mom was nurse at the time?
IGF-1 test for low Growth Hormone. Very important !
Deficiencies in this hormone are especially common in patients with moderate to severe traumatic brain injury.
Growth Hormone has many important roles, one of them pertinent to you
is its remarkable function to increase the number of receptors for ALL hormones, throughout the body, thus increasing the body's sensitivity to these hormones, which is particularly useful to prevent the damaging effects of their deficiencies.
It also promotes the regeneration of nerve tissue and it helps extend the longevity of damaged neurons.
Your symptoms are consistent with unresolved hormonal deficiencies.
Caffeine Abuse has multiple negative systemic effects on the neuropsychiatric, cardiovascular, endocrine, and gastrointestinal systems,
increasing the risk of bone loss ( also in teeth)
Some possible symptoms :
Chest pain
Irregular heart beat
Mood swings
Nausea
Tremors
Insomnia
Anxiety
Stomach pain
Rapid respiratory rate
Severe headaches
Blurred vision
Vomiting
Hallucinations
Seizures
Liver/Kidney damage
Chronic mood swings
Blackouts
Memory loss.
Where were your parents/ guardians, when you were 7 years old?
And all that sugar everyday? It's a miracle you're still alive with all that caffeine and sugar that entered your body and your brain!
I took a look at some of your photos, which show some of the effects of all this from the outside.
No, you should stop looking for another diagnosis, with the hope of a specific treatment for it.
Don't concern yourself with people not posting more stuff at this point,
-no disrespect to other posters- but you risk getting information overload
and drowning in a sea of suggestions, suspicions and ideas and not be able to do anything with it!
It's time now to detox, to cleanse, to rebalance, to correct deficiencies, to repair your leaky gut, to eliminate candida,to treat your adrenal fatigue.
You have a small window of opportunity to get this done, before any serious organ involvement.
Use the internet and start a fundraiser.You don't need big money to consult with a reputable Holistic Practitioner or Functional Medicine Doctor who have experience in G/I Digestive and Adrenal/Endocrine issues.
Please give my advice serious consideration.
There's no miracle approach, no wonder drug or therapy, no Dr House,
only a step by step long-term comprehensive natural and holistic treatment plan, facilitated by a practitioner, as I mentioned above.
You have some homework to do, with tons of information to shift through,
research on your own and put it all together.
Recovery will take a very long time (eg to eliminate candida you must be on anti-candida program for 1-2 months per year of candida, whose symptoms btw do not show up for years! , adrenal fatigue stage 2B
about 6 months to 2 years, stage 3 longer)
Wishing you well.
Niko
Thank you all for all the feedback.
Note: I'm using a tablet and while scrolling my finger randomly chose a best answer by accident. I've contacted the moderators of this forum about it and they tell me this is a very common issue, but it can't be undone. I used to be an It professional before I was disabled by medical issues and I've ran a forum before so I know for a fact that it can be undone.
I certainly don't want people to stop helping me just because it looks like I chose a best answer. I did not choose a best answer and my problem is not resolved.
If anyone has anything helpful to add or if you think my condition sounds like something you've heard of or experienced yourself please say something.
This is killing me and I will die if this isn't figured out.
Please take a look at the photos of me in the links below. I need help.
▪http://www.mediafire.com/view/1lkg0tw4diqewod/Photo820.jpg
▪http://www.mediafire.com/view/cspityd7c8gjnig/Photo1053.jpg
▪http://www.mediafire.com/view/23o8grauuilz73y/Photo783.jpg
▪http://www.mediafire.com/view/rh7hus53emz6yq9/Photo1181.jpg
▪http://www.mediafire.com/view/todzo9asr566oq0/Photo1178.jpg
▪http://www.mediafire.com/view/keskc70znzvtebt/Photo859.jpg
▪http://www.mediafire.com/view/sycp9hgh5cadg28/Photo1497.jpg
▪http://www.mediafire.com/view/k3tek14n2q8eft5/IMG_20150916_204024.jpg
▪http://www.mediafire.com/view/hmr95nazyntqhyw/IMG_20150916_204119.jpg
Thanks,
Ryan
Note: I'm using a tablet and while scrolling my finger randomly chose a best answer by accident. I've contacted the moderators of this forum about it and they tell me this is a very common issue, but it can't be undone. I used to be an It professional before I was disabled by medical issues and I've ran a forum before so I know for a fact that it can be undone.
I certainly don't want people to stop helping me just because it looks like I chose a best answer. I did not choose a best answer and my problem is not resolved.
If anyone has anything helpful to add or if you think my condition sounds like something you've heard of or experienced yourself please say something.
This is killing me and I will die if this isn't figured out.
Please take a look at the photos of me in the links below. I need help.
▪http://www.mediafire.com/view/1lkg0tw4diqewod/Photo820.jpg
▪http://www.mediafire.com/view/cspityd7c8gjnig/Photo1053.jpg
▪http://www.mediafire.com/view/23o8grauuilz73y/Photo783.jpg
▪http://www.mediafire.com/view/rh7hus53emz6yq9/Photo1181.jpg
▪http://www.mediafire.com/view/todzo9asr566oq0/Photo1178.jpg
▪http://www.mediafire.com/view/keskc70znzvtebt/Photo859.jpg
▪http://www.mediafire.com/view/sycp9hgh5cadg28/Photo1497.jpg
▪http://www.mediafire.com/view/k3tek14n2q8eft5/IMG_20150916_204024.jpg
▪http://www.mediafire.com/view/hmr95nazyntqhyw/IMG_20150916_204119.jpg
Thanks,
Ryan
Hey everyone! Thanks for the responses! All of the feedback I've been receiving here has been great. I've received more help here the last few days than I ever have at any of the doctors offices I've been to over the past decade.
My main goal with this thread is to just bounce ides around, see if there are any common themes, receive feedback on my thoughts, get an outsiders perspective, and ultimately come up with a plan. I'm currently looking for a holistic doctor near me that might be able to help.
Additional information...
When I first started seeing my PCP he said he's thinking this looks like Lupus. He and nine other medical professionals have over the past two years have suggested I see a rheumatologist. So perhaps I have something like Lupus or Multiple Sclerosis. My Allergist did suggest I see an Immunologist to obtain a better understanding of what my immune system is doing.
The big thing I'm leaning towards is stress as a trigger. In August of 2013 I was emotionally stressed and physically stressed with all the farm work. There is evidence to support Adrenal Fatigue.
What makes my symptoms worse?
▪ Movement - (standing up, lifting, bending).
▪ Sitting up right
▪ Riding in vehicles (going fast) **
▪ Bowel movements
▪ Watching action movies **
▪ Playing intense video games **
▪ Listening to my favorite music **
▪ Intense conversation or debate **
▪ Sudden loud noises **
▪ Stressful situations **
▪ Sexual stimulation **
▪ Doctor visits (anxiety) **
▪ Foods
▪ Anger **
▪ Night
The majority of those triggers deal a lot with the SNS, adrenaline, and other hormones. Any type of stimulation seems to make this worse, which as I've read does occur with Adrenal Fatigue, Adrenal Burnout, Adrenal Insufficiency Syndrome.
To touch on what Niko said some of the problems I'm having with sexual stimulation may be normal, but my body just can't take it at the moment. My body's reaction to that stimulation is very negative. One thing I did forget to mention is that sexual stimulation causes me to break out in a rash on my penis and across my chest, which to me sounds like a very bad hormonal imbalance and that is why I decided to go to an Endocrinologist, but my Endocrinologist would rather argue with me about whether I should even be seeing her rather than listening to me and assessing my symptoms.
That takes me to the insurance and clinics that RockRose suggested. It would be nice if we lived in a perfect world where simply having insurance and going to a facility with highly trained doctors guaranteed you a diagnosis, but it is my experience that unfortunately that's just not the case. My condition has gradually worsened year after year and doctors have gone further and further in the wrong direction.
Money is also a big issue here. I'm unable to work, I don't have insurance, I don't qualify for government aid. I've got a GoFundMe page where I'm taking donations and a lot of people are stepping up to give me some advice about programs and such, but I'm living with family and on these aid applications it asks "what is the total income of the household?" Even though we're in poverty my step dad brings in enough money to disqualify me for help.
If this is stress induced Adrenal Fatigue, what type of treatment options are there? Also, during the two years of researching my symptoms I've found evidence that mold/fungal infections can damage the adrenal glands and cause problems. I've looked into adrenal crisis and it sounds a lot like some of what happens when this suddenly intensifies.
Additional details
▪When I was born the umbilical cord was wrapped around my throat. My mom said my o2 sat dropped down in the 20s and I was the deepest blue she had ever seen a human being. I do have learning disabilities and I stuttered as a child.
▪I was diagnosed with scoliosis as a child. You can really tell now that I've lost so much weight.
▪I had a massive head injury in 2002 and never got medical attention. I can still feel where it dented the back of my skull in. I've had trouble seeing ever since. Doctors have never looked into this, but I do know that head injuries can lead to conditions like ALS. Just after I hit my head I lost the ability to see in the seconds after. I never lost consciousness, but my vision faded to black. It was like that for about 30 seconds and my vision returned then slowly faded to solid white. When my vision came back it wasn't normal after that. I had to get glasses the same month I hit my head, but the glasses don't help. Not long after that I began having significant memory issues, involuntary muscle movements, insomnia and a list of symptoms that eventually sent me to doctors in 2004 and they initially thought I had a stroke because I was having speech problems and I could only say 4-5 words and I would forget what I was talking about. My speech was very choppy.
Then in mid 2005 one morning while making breakfast I fell to the floor of my mom's kitchen (I have no memory of this). My mom being a nurse rushed in to tend to me. When I woke up she told me she has no doubt that I was having a seizure. She said my eyes were rolled back in my head and my entire body was shaking. After that seizure I got much of my memory back and regained more control over my body, but I would lose my balance still and drop things a lot. I often wonder if this is possibly causing problems. It did change my personality and some details about me changed as well. Apparently my favorite color was red before my head injury. I have no memory of that. As far as I can remember my favorite color is blue, but my family tells me my favorite color was always red.
▪Starting in 2007 I began having three odd symptoms. Sometimes my ears do not hear correctly when I wake up in the morning. It's like my hearing is turning on and off. It clears up pretty quickly. The other thing that started happening was while sitting at my desk I would suddenly lose consciousness for a split second. It would last for less than a second. I also began having trouble riding in vehicles in 2007.
▪Over the years I've had intense sugar cravings to the point where I became a binge eater. Before this sudden explosion of symptoms I basically ate nonstop all day and I never would gain any weight. In fact, I've had difficult time trying to gain weight my entire life. I weighed 96lb my senior year of high school and finally managed to get it to hover between 135lb and 140lb.
▪I started drinking coffee at the age of seven and coffee became my primary beverage up until 2009. That's nearly 20 years of daily caffeine. At least 5 pots of coffee per day with each cup containing 4-6 spoons of sugar. After I quit drinking coffee is when I became a binge eater. That's why I rapidly lost weight when I got to where I couldn't eat in 2013. (I quit drinking coffee due to heart palpitations).
There are lots of little bits of information and I don't know what is relevant and what isn't. If you could help me determine the most pressing issue I'd appreciate it. I need a starting place. My mom thinks I should start by looking at my circulatory system, but that doesn't make much sense to me. We are far too poor to waste any money on tests that aren't going to reveal anything that's for sure.
Thanks,
Ryan
My main goal with this thread is to just bounce ides around, see if there are any common themes, receive feedback on my thoughts, get an outsiders perspective, and ultimately come up with a plan. I'm currently looking for a holistic doctor near me that might be able to help.
Additional information...
When I first started seeing my PCP he said he's thinking this looks like Lupus. He and nine other medical professionals have over the past two years have suggested I see a rheumatologist. So perhaps I have something like Lupus or Multiple Sclerosis. My Allergist did suggest I see an Immunologist to obtain a better understanding of what my immune system is doing.
The big thing I'm leaning towards is stress as a trigger. In August of 2013 I was emotionally stressed and physically stressed with all the farm work. There is evidence to support Adrenal Fatigue.
What makes my symptoms worse?
▪ Movement - (standing up, lifting, bending).
▪ Sitting up right
▪ Riding in vehicles (going fast) **
▪ Bowel movements
▪ Watching action movies **
▪ Playing intense video games **
▪ Listening to my favorite music **
▪ Intense conversation or debate **
▪ Sudden loud noises **
▪ Stressful situations **
▪ Sexual stimulation **
▪ Doctor visits (anxiety) **
▪ Foods
▪ Anger **
▪ Night
The majority of those triggers deal a lot with the SNS, adrenaline, and other hormones. Any type of stimulation seems to make this worse, which as I've read does occur with Adrenal Fatigue, Adrenal Burnout, Adrenal Insufficiency Syndrome.
To touch on what Niko said some of the problems I'm having with sexual stimulation may be normal, but my body just can't take it at the moment. My body's reaction to that stimulation is very negative. One thing I did forget to mention is that sexual stimulation causes me to break out in a rash on my penis and across my chest, which to me sounds like a very bad hormonal imbalance and that is why I decided to go to an Endocrinologist, but my Endocrinologist would rather argue with me about whether I should even be seeing her rather than listening to me and assessing my symptoms.
That takes me to the insurance and clinics that RockRose suggested. It would be nice if we lived in a perfect world where simply having insurance and going to a facility with highly trained doctors guaranteed you a diagnosis, but it is my experience that unfortunately that's just not the case. My condition has gradually worsened year after year and doctors have gone further and further in the wrong direction.
Money is also a big issue here. I'm unable to work, I don't have insurance, I don't qualify for government aid. I've got a GoFundMe page where I'm taking donations and a lot of people are stepping up to give me some advice about programs and such, but I'm living with family and on these aid applications it asks "what is the total income of the household?" Even though we're in poverty my step dad brings in enough money to disqualify me for help.
If this is stress induced Adrenal Fatigue, what type of treatment options are there? Also, during the two years of researching my symptoms I've found evidence that mold/fungal infections can damage the adrenal glands and cause problems. I've looked into adrenal crisis and it sounds a lot like some of what happens when this suddenly intensifies.
Additional details
▪When I was born the umbilical cord was wrapped around my throat. My mom said my o2 sat dropped down in the 20s and I was the deepest blue she had ever seen a human being. I do have learning disabilities and I stuttered as a child.
▪I was diagnosed with scoliosis as a child. You can really tell now that I've lost so much weight.
▪I had a massive head injury in 2002 and never got medical attention. I can still feel where it dented the back of my skull in. I've had trouble seeing ever since. Doctors have never looked into this, but I do know that head injuries can lead to conditions like ALS. Just after I hit my head I lost the ability to see in the seconds after. I never lost consciousness, but my vision faded to black. It was like that for about 30 seconds and my vision returned then slowly faded to solid white. When my vision came back it wasn't normal after that. I had to get glasses the same month I hit my head, but the glasses don't help. Not long after that I began having significant memory issues, involuntary muscle movements, insomnia and a list of symptoms that eventually sent me to doctors in 2004 and they initially thought I had a stroke because I was having speech problems and I could only say 4-5 words and I would forget what I was talking about. My speech was very choppy.
Then in mid 2005 one morning while making breakfast I fell to the floor of my mom's kitchen (I have no memory of this). My mom being a nurse rushed in to tend to me. When I woke up she told me she has no doubt that I was having a seizure. She said my eyes were rolled back in my head and my entire body was shaking. After that seizure I got much of my memory back and regained more control over my body, but I would lose my balance still and drop things a lot. I often wonder if this is possibly causing problems. It did change my personality and some details about me changed as well. Apparently my favorite color was red before my head injury. I have no memory of that. As far as I can remember my favorite color is blue, but my family tells me my favorite color was always red.
▪Starting in 2007 I began having three odd symptoms. Sometimes my ears do not hear correctly when I wake up in the morning. It's like my hearing is turning on and off. It clears up pretty quickly. The other thing that started happening was while sitting at my desk I would suddenly lose consciousness for a split second. It would last for less than a second. I also began having trouble riding in vehicles in 2007.
▪Over the years I've had intense sugar cravings to the point where I became a binge eater. Before this sudden explosion of symptoms I basically ate nonstop all day and I never would gain any weight. In fact, I've had difficult time trying to gain weight my entire life. I weighed 96lb my senior year of high school and finally managed to get it to hover between 135lb and 140lb.
▪I started drinking coffee at the age of seven and coffee became my primary beverage up until 2009. That's nearly 20 years of daily caffeine. At least 5 pots of coffee per day with each cup containing 4-6 spoons of sugar. After I quit drinking coffee is when I became a binge eater. That's why I rapidly lost weight when I got to where I couldn't eat in 2013. (I quit drinking coffee due to heart palpitations).
There are lots of little bits of information and I don't know what is relevant and what isn't. If you could help me determine the most pressing issue I'd appreciate it. I need a starting place. My mom thinks I should start by looking at my circulatory system, but that doesn't make much sense to me. We are far too poor to waste any money on tests that aren't going to reveal anything that's for sure.
Thanks,
Ryan
Hi RochRose.
Great advice pursuing insurance free coverage.
I live in Canada, where this is a non issue and therefore don't even think about it when replying to US based members.
The suggestion of a reputable clinic taking charge and figuring this out for Ryan is however, to my humble opinion, very optimistic.
A few points to support my opinion:
1. Lyme disease is NOT recognized as a chronic infection by the IDSA
2. Same for Pathogenic Mycoplasma and it's Co-infections
3. Leaky Gut Syndrome (Intestinal Permeabilty) is NOT an established medical diagnosis. Candida yeast infections (usually precede LGS) are rarely investigated.
4. Adrenal Fatigue is not an established diagnosis until it reaches stage 4
(adrenal failure/insufficiency)
5. Hypothyroidism type 2 (thyroid resistance) is NOT investigated!
Standard tests T3, T4 and TSH cannot detect type 2.
6. Neurological B12 and Folate (methylated forms) levels are not revealed by standard tests.
7. Hypomethylation is NOT in the diagnostic protocol of any specialty. ???
8.Therapy with Natural herbs and supplements (when prescribed medications do not or cannot bring the desired results) cannot be implemented, as it is not within established treatment guidelines.
Often it is illegal/criminal to prescribe a natural therapy.
9. PTSD and other traumatic/emotional imbalances are not considered,
nor investigated. Many conditions have a very strong emotional/stress component and will not resolve, until the emotional imbalance is cleared.
10. Most Autoimmune conditions are considered incurable, therefore only symptom management with drugs is the only treatment available.
I can go on, but I'm sure, I made my point.
My intend is not to be critical, nor negative and under different circumstances, where time and money were not an issue, by all means, this would have been another possible consideration.
Insurance coverage will not cover ALL his expenses, including the expenses of the person accompanying him.
I have no idea what the wait time is in order to get in such a clinic,
but if it is anything like here in Canada, it is very discouraging.
Cheers,
Niko
Great advice pursuing insurance free coverage.
I live in Canada, where this is a non issue and therefore don't even think about it when replying to US based members.
The suggestion of a reputable clinic taking charge and figuring this out for Ryan is however, to my humble opinion, very optimistic.
A few points to support my opinion:
1. Lyme disease is NOT recognized as a chronic infection by the IDSA
2. Same for Pathogenic Mycoplasma and it's Co-infections
3. Leaky Gut Syndrome (Intestinal Permeabilty) is NOT an established medical diagnosis. Candida yeast infections (usually precede LGS) are rarely investigated.
4. Adrenal Fatigue is not an established diagnosis until it reaches stage 4
(adrenal failure/insufficiency)
5. Hypothyroidism type 2 (thyroid resistance) is NOT investigated!
Standard tests T3, T4 and TSH cannot detect type 2.
6. Neurological B12 and Folate (methylated forms) levels are not revealed by standard tests.
7. Hypomethylation is NOT in the diagnostic protocol of any specialty. ???
8.Therapy with Natural herbs and supplements (when prescribed medications do not or cannot bring the desired results) cannot be implemented, as it is not within established treatment guidelines.
Often it is illegal/criminal to prescribe a natural therapy.
9. PTSD and other traumatic/emotional imbalances are not considered,
nor investigated. Many conditions have a very strong emotional/stress component and will not resolve, until the emotional imbalance is cleared.
10. Most Autoimmune conditions are considered incurable, therefore only symptom management with drugs is the only treatment available.
I can go on, but I'm sure, I made my point.
My intend is not to be critical, nor negative and under different circumstances, where time and money were not an issue, by all means, this would have been another possible consideration.
Insurance coverage will not cover ALL his expenses, including the expenses of the person accompanying him.
I have no idea what the wait time is in order to get in such a clinic,
but if it is anything like here in Canada, it is very discouraging.
Cheers,
Niko
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I've read through this thread and there doesn't seem to be any medical facility taking charge. Folks here on this thread are really helpful and suggesting things, but you need the Mayo clinic or some other clinic with an equal reputation for taking charge and driving this to ground.
It seems to me that all the medical professionals so far have run a few tests and shrugged their shoulders and passed you on.
Before you die, sign up for free health care and go to the Mayo where a comprehensive staff will care.
Best wishes, and prayers.