Strange Symptoms - No Answers - PLEASE HELP

[shelin]

Hey All,


I was wondering if any of you can help me. The last couple of months have been hard for me and I just want to start feeling better. I'm begging any of you to take a look at the below and let me know of any insight that you can possibly provide on the matter.
Over the last four months, I have been experiencing a wide range of strange and disturbing symptoms. I have not found any answers from a traditional healthcare standpoint and decided to reach out to you to see if you've heard of anything like this. Below, I will outline the symptoms that I have been experiencing along with the tests that I have done from a traditional healthcare standpoint. Again, ANY help that you can provide on this would be greatly appreciated. I have a young daughter at home and really need to start getting better.

Symptoms:
Frequent Heartburn - I've never struggled with heartburn before this. This causes a burning in my chest and tightness in my throat.
Chest Pains
Muscle Twitching - Body-Wide... This comes and goes and can be felt anywhere, especially in my legs.
Muscle Coordination/Off-Balance - I feel like my hands are not coordinated and that my balance is off, though when I test my balance, etc... I seem to be fine.
Muscle Soreness - This comes and goes and is not brought on by a specific activity.
Heavy Anxiety/Doom Feelings - These seem to not really be brought on by anything in specific.
Random Skin Rashes/Tingling Mouth - I do not have any allergies that I am aware of and this is a newer symptom.
Frequent Belching and Gas
Urinary Slowness and Frequent
Vision Floaters
Heavy fatigue after eating
Mouth Sores/Blisters
Hypersensitive Nerves - Water drops are very noticeable, etc.
Fine Motor Functions Appear to be fine

Traditional Healthcare Checks:
Heart Echo and Stress Test - Clear
Endoscopy and Celic/HPylori Screen - Clear
Neuro Exams x2 - Clear and no muscle weakness
Lyme Disease and Western Blot - Clear - Quest Diagnostics
Rhumotoidologist Exam - Clear
Endocrinologist - Ordered 7-Day Glucose Monitor and Testosterone Check.
Diabetes Blood Tests - Clear
Chest X-Ray - Clear
EKG - Clear
ANA Test - Mild Positive
Blood Sugar and C-Pep Tests - Mildly Off - Investigating Further
CBC Tests - Clear
Brain MRI - Clear
Spine MRI - Clear
Brain CT Scan - Clear
EEG - Clear
Lupus Blood Test - Negative
Inflammation Rate Blood Tests - Negative
STD Tests - Negative
Heavy Metals Blood Test - Negative
Vitamin Blood Tests - Negative
Parasite Stool Test - Negative
Vitamin Tests - All Fine - Except Low D
Kidney and Liver Blood Tests - Clear
Celiac Blood Test - Positive but then Endoscopy Negative for it.

I've basically learned to live with these symptoms at this point but I feel like things are getting worse. I keep getting told that I am find but I know that I am not. I find myself missing things sometimes when trying to grab something/missing keyboard keys, getting random rashes, etc. The most disturbing is the muscle twitching that can occur anywhere on my body.

I am getting nowhere with traditional medicine at this point and I feel that doctors are scratching their heads. I've done so many tests so it is hard to argue with them but I also know that the symptoms are still present and persistent. Really the only thing that we have to go on is a positive ANA test but the Rhumologist says that I am fine.

My diet and exercise patterns have always been excellent and I do not take any medication.

I'm really very troubled by everything and am desperate at this point.

I would really appreciate any information that someone can provide on my issues.


Thank You,

 

[valentinelynx]

Some of your symptoms–the GI stuff and skin reactions in particular–make me think of MCAS (mast cell activation syndrome). Of course, MCAS can show up as just about anything, but you might want to explore it.

 

[Moof]

My B12 deficiency caused quite a number of the symptoms on your list (actually pretty much all of them except the GI stuff!), but it didn't show up when I was tested. I also had dementia symptoms and hair loss. My GP wouldn't even accept that I'd developed malabsorption until he saw with his own eyes the level of recovery I experienced after a course of B12 injections supplemented by methylfolate.

Obviously what you're suffering may be nothing at all to do with B vitamin deficiency, but it's always worth considering when weird neurological symptoms start showing up. The initial two-week 'loading dose' of alternate-day injections is a cheap and easy treatment (I do them myself), and they can be spaced out and then discontinued if they make no difference after a few weeks.

Whatever's behind it, I really hope you manage to find some answers.

 

[Stretched]

If I had these symptoms I would prioritize seeing a neurologist, especially for the twitching which could be brain related, like restless leg syndrome, etc.

 

[wigglethemouse]

Muscle Twitching - Body-Wide... This comes and goes and can be felt anywhere, especially in my legs.

Test for Red Blood Cell Magnesium level. Also try a magnesium oil spray to rub into your legs to see if it helps calm the twitches. Works for some folks.

Some of your symptoms–the GI stuff and skin reactions in particular–make me think of MCAS (mast cell activation syndrome). Of course, MCAS can show up as just about anything, but you might want to explore it.

I agree with this. Also vision floaters can be MCAS. Very tricky to test for. You can read "Never bet against Occam" by Afrin to learn more about MCAS and how it can affect so many things.

 

[AngelM]

I think you could be a younger version of me. Like you, I have been tested from one end to the other, countless times, with no abnormalities and no answers. During my most recent battery of full-body blood tests, body scans, MRI’s, and EKG’s, the only abnormality was the elevation of one marker for Myasthenis Gravis. So, convinced I had found the answer, I traveled 700 miles to see an MG specialist who looked at me as if I had escaped from the local mental asylum. She saw no evidence of an abnormal gait or the unsteadyness of which I’d complained. And, in fact, the test abnormality was so small as to be insignificant. (You’ll find abnormal ANA tests are fairly common, and are of usually of no significance unless in conjunction with other abnormal test results.


Two things I wanted to mention: First, in regard to heartburn and gas (others have reported a “poisonous” feeling, in their throats), I can’t help but wonder if this physical symptom is a result of infection or allergy-related sinus problems. Sinus drainage can be very caustic as it drips down your throat, through your esophagus, and into your stomach, causing gut pain, heartburn and gas. Just one more piece of the puzzle that connects sinuses to the current research on CFS and a sick gut. Though you don’t have to have CFS to suffer from these symptoms.


Second, although you probably don’t want to hear this, many of your symptoms, like mine in the past, fit into the category of anxiety. Not to diminish your complaint in any way, but anxiety almost always accompanies frightening and unexplained physical symptoms. Especially when these symptoms affect your ability to function. Anxiety is very real (I am very troubled at this point and am desperate) and when left unchecked will eventually take you down the road to depression (feeling of doom). Please don’t misunderstand my suggestion of anxiety or depression as a dismissal of your very real symptoms, because that is not my intention. But since you mention that you have never had anything like this before, it might be a direction worth exploring, at least on a trial basis.


The reason I bring this up is that, from years of experience, I’ve learned that severe anxiety can come from left field and bring with it a list of seemingly unrelated symptoms like those you have listed: from chest pain to “feelings of doom” to muscle twitches to poor coordination to muscle pain to “floaters.” These are very real and terrifying physical symptoms—that can cause you to believe with absolute certainty that “I must be dying.”


I understand what you are going through and how miserable it is, because I’ve been there and back. Being unable to function is bad enough, but living day after day with fatigue and other debilitating symptoms while at the same time struggling to deal with the demands of small children, is pure Hell.

 

[ljimbo423]

@shelin

Hello and welcome!

What you are describing sounds very similar to Fibromyalgia. Fibromyalgia and CFS have a lot of overlapping symptoms. Here is a link to common Fibromyalgia symptoms.

At the bottom of the page is a very good list of symptoms and the percentage of people with Fibromyalgia that report each symptom. https://www.fibrocenter.com/fibromyalgia-symptoms

 

[Shoshana]

I don't know what to suggest, but I do want to add my understanding and support.

It is so difficult to figure out what to do, after all you have done, to try to find out what to do!


I hope that you stumble on something, very soon, in your detective work, that will help you, for your own and for your child's sake, as well. Keep us posted, and welcome.

 

[shelin]

Hello All,

Thanks so much for all the wonderful insight! I've mentioned to my doctors about he Mass Cell and will hopefully get a few answers about it tomorrow. I know that there are a few indicative blood tests that can be done for it. It sounds like it could be a possibility but also unlikely, we'll see.

As for the vitamin B12, I have has my blood tested which has come back fine. My doctor recently ordered a "pre-cursor" B12 blood test that may show something, we'll see. I may just start taking 2000iu a day to see if it helps. Does that sound like an appropriate starting dosage?

Anxiety... Yeah, it is definitely not what I would like to hear as this has been SO persistent over the last four months. The symptoms wax and wayne, they also seem to be persistent to a certain area of my body one at a time. It's really quite strange.

I also keep getting told to get the "real Lyme disease check." Apparently, the Western Blot in very inaccurate and a lot of my symptoms could be related to that. I'm thinking about just shelling out the out of pocket expense to be a naturopath who would use the more accurate testing, etc.

As for dealing with it while having a family at home, I was very depressed for about two weeks over the symptoms then I basically no longer allowed them to control me anymore. My daughter, wife, and I have a wonderful relationship and still do daily outings, eat together, etc... Happy home life. I just need to get better and have some answers!

Can anyone think of anything else?

You are all wonderfully supportive and I am so happy to have posted here.

Thank You!

 

[shelin]

I think you could be a younger version of me. Like you, I have been tested from one end to the other, countless times, with no abnormalities and no answers. During my most recent battery of full-body blood tests, body scans, MRI’s, and EKG’s, the only abnormality was the elevation of one marker for Myasthenis Gravis. So, convinced I had found the answer, I traveled 700 miles to see an MG specialist who looked at me as if I had escaped from the local mental asylum. She saw no evidence of an abnormal gait or the unsteadyness of which I’d complained. And, in fact, the test abnormality was so small as to be insignificant. (You’ll find abnormal ANA tests are fairly common, and are of usually of no significance unless in conjunction with other abnormal test results.


Two things I wanted to mention: First, in regard to heartburn and gas (others have reported a “poisonous” feeling, in their throats), I can’t help but wonder if this physical symptom is a result of infection or allergy-related sinus problems. Sinus drainage can be very caustic as it drips down your throat, through your esophagus, and into your stomach, causing gut pain, heartburn and gas. Just one more piece of the puzzle that connects sinuses to the current research on CFS and a sick gut. Though you don’t have to have CFS to suffer from these symptoms.


Second, although you probably don’t want to hear this, many of your symptoms, like mine in the past, fit into the category of anxiety. Not to diminish your complaint in any way, but anxiety almost always accompanies frightening and unexplained physical symptoms. Especially when these symptoms affect your ability to function. Anxiety is very real (I am very troubled at this point and am desperate) and when left unchecked will eventually take you down the road to depression (feeling of doom). Please don’t misunderstand my suggestion of anxiety or depression as a dismissal of your very real symptoms, because that is not my intention. But since you mention that you have never had anything like this before, it might be a direction worth exploring, at least on a trial basis.


The reason I bring this up is that, from years of experience, I’ve learned that severe anxiety can come from left field and bring with it a list of seemingly unrelated symptoms like those you have listed: from chest pain to “feelings of doom” to muscle twitches to poor coordination to muscle pain to “floaters.” These are very real and terrifying physical symptoms—that can cause you to believe with absolute certainty that “I must be dying.”


I understand what you are going through and how miserable it is, because I’ve been there and back. Being unable to function is bad enough, but living day after day with fatigue and other debilitating symptoms while at the same time struggling to deal with the demands of small children, is pure Hell.

Hello Angel,

Thanks so much for this wonderful reply. If you don't mind, would you be willing to private message me? I'd like to talk to you a bit more. I feel like you could help me with shining some more light onto all of this.

 

[AngelM]

Hello Angel,

Thanks so much for this wonderful reply. If you don't mind, would you be willing to private message me? I'd like to talk to you a bit more. I feel like you could help me with shining some more light onto all of this.

Definitely. Never done it before, but I’ll figure it out.

 

[Mel9]

Hello All,

Thanks so much for all the wonderful insight! I've mentioned to my doctors about he Mass Cell and will hopefully get a few answers about it tomorrow. I know that there are a few indicative blood tests that can be done for it. It sounds like it could be a possibility but also unlikely, we'll see.

As for the vitamin B12, I have has my blood tested which has come back fine. My doctor recently ordered a "pre-cursor" B12 blood test that may show something, we'll see. I may just start taking 2000iu a day to see if it helps. Does that sound like an appropriate starting dosage?

Anxiety... Yeah, it is definitely not what I would like to hear as this has been SO persistent over the last four months. The symptoms wax and wayne, they also seem to be persistent to a certain area of my body one at a time. It's really quite strange.

I also keep getting told to get the "real Lyme disease check." Apparently, the Western Blot in very inaccurate and a lot of my symptoms could be related to that. I'm thinking about just shelling out the out of pocket expense to be a naturopath who would use the more accurate testing, etc.

As for dealing with it while having a family at home, I was very depressed for about two weeks over the symptoms then I basically no longer allowed them to control me anymore. My daughter, wife, and I have a wonderful relationship and still do daily outings, eat together, etc... Happy home life. I just need to get better and have some answers!

Can anyone think of anything else?

You are all wonderfully supportive and I am so happy to have posted here.

Thank You!

One thing I recently discovered. Finding adequate VitB12 in blood is no guide to whether your cells need more. Try injections or sublingual drops and see if you improve.

 

[shelin]

One thing I recently discovered. Finding adequate VitB12 in blood is no guide to whether your cells need more. Try injections or sublingual drops and see if you improve.

Hey Mel,

I was thinking about starting to take 2000iu B12 daily to see if it helps with anything... Is there any harm to doing that?

 

[shelin]

Definitely. Never done it before, but I’ll figure it out.

Hey Angel! I need to message a bit more around the forum before I can send a private message. I just wanted some more insight from someone who went a long time with no answers and dealing with the anxiety associated, etc.

 

[AngelM]

Definitely seek advice from forum members. There is so much knowledge here, and it is obvious that hours of personal research has gone into every reply you can’t go wrong.

 

[shelin]

Definitely seek advice from forum members. There is so much knowledge here, and it is obvious that hours of personal research has gone into every reply you can’t go wrong.

Hey Angel, I just sent you a private message!

 

[shelin]

Hey All,

I just thought that I should provide you all with an update on everything. So I met with an Allergist to discuss my symptoms and she is not worried from a allergy stand-point. She agreed to do the Mast Cell Activation blood and urine test as a precaution though she feels that my symptoms do not fit the profile. My most recent blood work Vitamin E, Cereal Allergy Grain Test, Mold Test, Basic Metabolic Panel, MMA Test, Thyroid Tests, Endoscopy/Colonoscopy, and many endocrine relatated tests... all have come back normal yet the wonderful symptoms still persist. I am going to meet with a functional doctor on Monday and just pay out of pocket for it. It is expensive but many people have recommended the office to me and if they can at least point me in the right direction, I'll be happy. Does anyone have any further insight?

Thanks All!

 

[shelin]

Bartonella and mycoplasma and further mold testing has been ordered and I'll get the blood drawn on Wednesday. The functional doc/MD is almost certain that is the cause of my symptoms. I also have the blood test/urine for MG and Mast Cell Activation in the works... hopefully I'm nearing a diagnosis for all of this. I'll keep you all updated!

 

[flong]

Just wondering if there was any update? @shelin

 

[crypt0cu1t]

I think you could be a younger version of me. Like you, I have been tested from one end to the other, countless times, with no abnormalities and no answers. During my most recent battery of full-body blood tests, body scans, MRI’s, and EKG’s, the only abnormality was the elevation of one marker for Myasthenis Gravis. So, convinced I had found the answer, I traveled 700 miles to see an MG specialist who looked at me as if I had escaped from the local mental asylum. She saw no evidence of an abnormal gait or the unsteadyness of which I’d complained. And, in fact, the test abnormality was so small as to be insignificant. (You’ll find abnormal ANA tests are fairly common, and are of usually of no significance unless in conjunction with other abnormal test results.


Two things I wanted to mention: First, in regard to heartburn and gas (others have reported a “poisonous” feeling, in their throats), I can’t help but wonder if this physical symptom is a result of infection or allergy-related sinus problems. Sinus drainage can be very caustic as it drips down your throat, through your esophagus, and into your stomach, causing gut pain, heartburn and gas. Just one more piece of the puzzle that connects sinuses to the current research on CFS and a sick gut. Though you don’t have to have CFS to suffer from these symptoms.


Second, although you probably don’t want to hear this, many of your symptoms, like mine in the past, fit into the category of anxiety. Not to diminish your complaint in any way, but anxiety almost always accompanies frightening and unexplained physical symptoms. Especially when these symptoms affect your ability to function. Anxiety is very real (I am very troubled at this point and am desperate) and when left unchecked will eventually take you down the road to depression (feeling of doom). Please don’t misunderstand my suggestion of anxiety or depression as a dismissal of your very real symptoms, because that is not my intention. But since you mention that you have never had anything like this before, it might be a direction worth exploring, at least on a trial basis.


The reason I bring this up is that, from years of experience, I’ve learned that severe anxiety can come from left field and bring with it a list of seemingly unrelated symptoms like those you have listed: from chest pain to “feelings of doom” to muscle twitches to poor coordination to muscle pain to “floaters.” These are very real and terrifying physical symptoms—that can cause you to believe with absolute certainty that “I must be dying.”


I understand what you are going through and how miserable it is, because I’ve been there and back. Being unable to function is bad enough, but living day after day with fatigue and other debilitating symptoms while at the same time struggling to deal with the demands of small children, is pure Hell.

Did you have the AChR Binding Antibodies? I tested positive for those at a level of 4.7 (normal being under .50)