Aa
undiagnosable
I am at my wits end and am desperately hoping someone anyone can provide answers or suggestions for me.
I was always a sickly child, and when I hit puberty I suddenly developed an allergy to all but 3 oral aanitbiotics. I would consistently get strep throat, kidney and bladder infections, pneumonia, and various other illness ranging from severe to mild.
I got pregnant with my son in 2010 and my symptoms became exasperated to the point I was diagnosed with undifferentiated connective tissue disease. Since then, answers have topped flowing. After my son was born I suffered septic shock and severe hemorrhaging. It took 6 months of recovery to even have the strength to stand amd I frequently became dizzy and fainting. After 6 months postpartum it was discovered that my uterus had adhered to my abdominal wall, twisted and caught up my ovaries and fallopian tubes. My uterus had ripped and torn and required reconstructive surgery.
After this was fixed we focused on the remaining symptoms, which are:
Daily fevers ranging from 99-104+ for weeks on end
Extreme weight loss - 94 lbs in 5 months
vomiting
chills
body aches
severe pain abdominal and back
swollen lymph nodes on the back of my neck that have lasted for more than six months and growing.
protein and bilirubin have been found in my urine as well as blood.
Kidney damage has been discovered as well as heart complications such as minor heart attacks and weakness.
my blood work always comes back slightly askew, showing high white blood cells, low red blood cells, high neutrons high lymphocytes and low platelets.
I have a lacy web rash on my ankles and crawling up my leg
My skin appears Lacey and red when in the Sun for short or long periods of time.
I have suffered chronic pneumonia and bronchitis
Fatigue
Anemia
And more recently and devastating, my teeth began chopping away and breaking when eating even a sandwich or just biting down (note that dentists have monitored this for 1 year and have conducted numerous procedures before telling me i woukd meed tk have a majority pf my teeth removed of not all. They have determined that it is not possible for my teeth to have become this severely damaged in the period of time that transpired and i have been told I am to assume my body is attacking my teeth)
Other symptoms include being cold all the time
Unable to rouse in the mornings
Numbness and tingling in left side and back of my head
Severe change on eye prescription
confusion
It goes on. I am praying someone can point me in the right direction. Lupus is the most popular place for my doctors to start, however none of them have been in agreement that you can have lupus but not test positive for ANA.
Thank you
I was always a sickly child, and when I hit puberty I suddenly developed an allergy to all but 3 oral aanitbiotics. I would consistently get strep throat, kidney and bladder infections, pneumonia, and various other illness ranging from severe to mild.
I got pregnant with my son in 2010 and my symptoms became exasperated to the point I was diagnosed with undifferentiated connective tissue disease. Since then, answers have topped flowing. After my son was born I suffered septic shock and severe hemorrhaging. It took 6 months of recovery to even have the strength to stand amd I frequently became dizzy and fainting. After 6 months postpartum it was discovered that my uterus had adhered to my abdominal wall, twisted and caught up my ovaries and fallopian tubes. My uterus had ripped and torn and required reconstructive surgery.
After this was fixed we focused on the remaining symptoms, which are:
Daily fevers ranging from 99-104+ for weeks on end
Extreme weight loss - 94 lbs in 5 months
vomiting
chills
body aches
severe pain abdominal and back
swollen lymph nodes on the back of my neck that have lasted for more than six months and growing.
protein and bilirubin have been found in my urine as well as blood.
Kidney damage has been discovered as well as heart complications such as minor heart attacks and weakness.
my blood work always comes back slightly askew, showing high white blood cells, low red blood cells, high neutrons high lymphocytes and low platelets.
I have a lacy web rash on my ankles and crawling up my leg
My skin appears Lacey and red when in the Sun for short or long periods of time.
I have suffered chronic pneumonia and bronchitis
Fatigue
Anemia
And more recently and devastating, my teeth began chopping away and breaking when eating even a sandwich or just biting down (note that dentists have monitored this for 1 year and have conducted numerous procedures before telling me i woukd meed tk have a majority pf my teeth removed of not all. They have determined that it is not possible for my teeth to have become this severely damaged in the period of time that transpired and i have been told I am to assume my body is attacking my teeth)
Other symptoms include being cold all the time
Unable to rouse in the mornings
Numbness and tingling in left side and back of my head
Severe change on eye prescription
confusion
It goes on. I am praying someone can point me in the right direction. Lupus is the most popular place for my doctors to start, however none of them have been in agreement that you can have lupus but not test positive for ANA.
Thank you
Don't give up. My mother waited 30 years for a proper diagnoses. I'm 27 and have been at it for 10 years now. Gather as much information and do as much research as you can on your own and then go to doctor after doctor until you find online that will listen and not give up on you. Don't listen to the ones that say nothing is wrong or its all in your head, because you no better.
I gave up for a few years. But one my son, who is 4 now, woke up excited for the day and took one look at me and new that no adventures would be had that day. He also gets very scared whenever I show signs of getting a cold or being overly exhausted. It occurred to me that his entire life, whenever mommy gets slightly sick, she ends up on the hospital for days/weeks. It also broke my heart that he can look at me and tell it's not a good day. It renewed my inspiration to seek an answer. He deserves a mommy who can play with him, keep up with him. Not a mommy that plays cars for 5 minutes and is wiped out for an hour or two.
I will keep you in my thoughts that you find answers!
I gave up for a few years. But one my son, who is 4 now, woke up excited for the day and took one look at me and new that no adventures would be had that day. He also gets very scared whenever I show signs of getting a cold or being overly exhausted. It occurred to me that his entire life, whenever mommy gets slightly sick, she ends up on the hospital for days/weeks. It also broke my heart that he can look at me and tell it's not a good day. It renewed my inspiration to seek an answer. He deserves a mommy who can play with him, keep up with him. Not a mommy that plays cars for 5 minutes and is wiped out for an hour or two.
I will keep you in my thoughts that you find answers!
If it was a simple gluten intolerance, I would have been cured years ago. I have undergone allergy testing and have done extreme changes to my diet to rule out things like a gluten intolerance. Unfortunately it had no positive affect on my health. But I will bring up to the doctor I am waiting to see.
---Beyond Celiac's*--
Grains/carbs/gluten intolerance:
Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive or only digestive issues).
Now they can also test which part of the body is affected!
Most hypothyroid (primary or secondary and many likely undiagnosed or under-regulated) sufferers have gluten intolerance and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!
*It ain't so much the things we know that get us into trouble. It's the things we know that just ain't so.
---Mark Twain---
--- Dental connection:
Your dental issues can only be attributed to a small number of "root" problems.
My guess would be ongoing undetected bacterial infection, toxicity AND
high acidity levels.
The oral cavity is a perfect host (moist and warm)for infectious bacteria to not just live, but to thrive. Add toxins and fungal agents and this becomes
a very significant source of not only oral and dental issues, but a huge entry point of these illness promoting unwanted agents in your body, leading to
systemic conditions, affecting multiple parts of the body.
High internal acidic conditions are disease promoting and potentially causing calcium leaching from the bones and teeth to be used as a buffer in the blood. The blood cannot have high acidity; it is tightly controlled.
Vitamin D in the presence of Vitamin A, C and Vitamin K work in synergy to metabolize calcium AND send it to the bones, joints & teeth, instead of the tissues!
Any deficiency in the above vitamins may cause health complications, so all these levels MUST be checked thoroughly! Take nothing for granted!
Take care!
Niko
Grains/carbs/gluten intolerance:
Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive or only digestive issues).
Now they can also test which part of the body is affected!
Most hypothyroid (primary or secondary and many likely undiagnosed or under-regulated) sufferers have gluten intolerance and don't even know it!
The gluten molecules-mainly from gmo grains- resemble the TPO(Thyroid Peroxidase - an enzyme necessary for the signalling Thyroid hormone production) molecules and thus the immune system in its response against gluten, attacks the TPO in the Thyroid also!
*It ain't so much the things we know that get us into trouble. It's the things we know that just ain't so.
---Mark Twain---
--- Dental connection:
Your dental issues can only be attributed to a small number of "root" problems.
My guess would be ongoing undetected bacterial infection, toxicity AND
high acidity levels.
The oral cavity is a perfect host (moist and warm)for infectious bacteria to not just live, but to thrive. Add toxins and fungal agents and this becomes
a very significant source of not only oral and dental issues, but a huge entry point of these illness promoting unwanted agents in your body, leading to
systemic conditions, affecting multiple parts of the body.
High internal acidic conditions are disease promoting and potentially causing calcium leaching from the bones and teeth to be used as a buffer in the blood. The blood cannot have high acidity; it is tightly controlled.
Vitamin D in the presence of Vitamin A, C and Vitamin K work in synergy to metabolize calcium AND send it to the bones, joints & teeth, instead of the tissues!
Any deficiency in the above vitamins may cause health complications, so all these levels MUST be checked thoroughly! Take nothing for granted!
Take care!
Niko
thank you. Your comment enlightens my journey to get to the bottom of my problem. Rash reoccurring does not itch first appearance thought to be ring worm, not. sun triggers; stressed to the max for 4 yrs. eye sight diminishing at fast rate,confusion which is scary to me at 50..insominia and fatigue,rash only on back noticed in nape of hair. looks like whelps.. I feel so bad when I look at myself that I isolate myself. knots in my arms I noticed lately too .. falling apart at 50 :(
Thank you for your contributions! I am currently on the waiting list for a Rhuematalogist in my area that takes "special" cases. I have 4 months to go since she only works with a small number of patients.
I am compiling a notebook full of syptoms, diseases//illnesses, tests, diagnoses that were ruled out and doctors records. I am going to document and research all that you spoke about to bring to my doctor for places we can start from.
I have been tested for Celiac Disease and it has been ruled out. I have been tested for most everything but MS, Cancers, Lymphoma and other "extreme" conditions.
In the end, all doctors say I have fibromyalsia and throw me a script for nueronton or pain killers, and tell me to suck it up.
My biggest concern at this time are the swollen lymph nodes on the back my neck left side just below and in my hairline, which have grown from 2 to 5 and are much larger than when starting out. Added to this are a series of what can only be described as electrical shocks with numbing in various "zones" of my body (i.e. just the upper part of my left shin, or just the left side of my head)
I am hoping that your contributions can lead me and my doctor to a solution that I can finally start being treated for and entering a recovery.
I am compiling a notebook full of syptoms, diseases//illnesses, tests, diagnoses that were ruled out and doctors records. I am going to document and research all that you spoke about to bring to my doctor for places we can start from.
I have been tested for Celiac Disease and it has been ruled out. I have been tested for most everything but MS, Cancers, Lymphoma and other "extreme" conditions.
In the end, all doctors say I have fibromyalsia and throw me a script for nueronton or pain killers, and tell me to suck it up.
My biggest concern at this time are the swollen lymph nodes on the back my neck left side just below and in my hairline, which have grown from 2 to 5 and are much larger than when starting out. Added to this are a series of what can only be described as electrical shocks with numbing in various "zones" of my body (i.e. just the upper part of my left shin, or just the left side of my head)
I am hoping that your contributions can lead me and my doctor to a solution that I can finally start being treated for and entering a recovery.
The lacey appearance of the skin sound like livedo reticularis. And if that is the case, due to your other symptoms, likely secondary to another condition.
Excerpt from DermNet NZ...
"Secondary livedo reticularis is of known cause. It may be a sign of vasculitis (inflammation of the blood vessels) or of obstruction of the vessel by some circulating material. The following conditions may be responsible:
Vasculitis
* Livedoid vasculitis
* Polyarteritis nodosa
* Systemic lupus erythematosus
* Dermatomyositis
* Rheumatoid arthritis
* Lymphoma
* Pancreatitis
* Tuberculosis
Obstruction
*Cryoglobulinaemia (immune globulins that precipitate in the cold)
* Antiphospholipid syndrome (blood clots due to sticky platelets) or lupus anticoagulant syndrome
* Hypercalcaemia (calcium deposits)
* Polycythaemia rubra vera (excessive number of red cells) or thrombocythaemia (platelet clumps)
* Infections (syphilis and tuberculosis)
* Arteriosclerosis (cholesterol emboli) and homocystinuria
* Intra-arterial injection (especially in drug addicts)
Adverse reaction to medication
*Amantadine, used to treat Parkinson disease"
Excerpt from DermNet NZ...
"Secondary livedo reticularis is of known cause. It may be a sign of vasculitis (inflammation of the blood vessels) or of obstruction of the vessel by some circulating material. The following conditions may be responsible:
Vasculitis
* Livedoid vasculitis
* Polyarteritis nodosa
* Systemic lupus erythematosus
* Dermatomyositis
* Rheumatoid arthritis
* Lymphoma
* Pancreatitis
* Tuberculosis
Obstruction
*Cryoglobulinaemia (immune globulins that precipitate in the cold)
* Antiphospholipid syndrome (blood clots due to sticky platelets) or lupus anticoagulant syndrome
* Hypercalcaemia (calcium deposits)
* Polycythaemia rubra vera (excessive number of red cells) or thrombocythaemia (platelet clumps)
* Infections (syphilis and tuberculosis)
* Arteriosclerosis (cholesterol emboli) and homocystinuria
* Intra-arterial injection (especially in drug addicts)
Adverse reaction to medication
*Amantadine, used to treat Parkinson disease"
Lupus diagnostic criteria are 11, out of which you need a minimum of 4 to be met (present or recent past symptoms) for a "probable " Lupus dx.
A positive ANA is NOT necessary for a dx, according to American College of Rheumatology.
Unresolved anemia co-relates with low thyroid function, which could go on being undiagnosed, even if standard thyroid testing indicates otherwise.
Serum thyroid testing tsh, T3 & T4 are flawed.
One needs Free T3, Free T4 AND Reverse T3 to fully rule in or out low thyroid function.
My suspicion is that you may have:
a. low adrenal function because of chronic biological and external stress, causing dysregulated cortisol levels and secondary hypothyroidism.
b. low grade chronic pathogenic infectious condition (pathogenic mycoplasma and any of its co-infections). Do a search here in MedHelp for Dr. Garth Nicolson and expert in this field and part-time MedHelp contributor.
Also please note that Cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
Have you ever been tested for celiac's and wheat/gluten intolerance or sensitivity? That should be ruled out as well.
Leaky gut syndrome and Candida are other possibilities, but these are not within the "established" scope of conventional medicine.
If you need details for testing regarding the above, let me know!
Lupus may be a natural progression of unresolved low thyroid function and
untreated (& likely undetected) pathogenic infections as mentioned above, where the most vulnerable organs/systems get affected first.
You will need a Dr. House type of Holistic Medicine Practitioner or Naturopathic Doctor to guide you back to better health.
Most conventional specialists do not converge effectively, when too many
unanswered questions still exist in the various relative fields to your case.
Your chances of a firm diagnosis and consequent effective treatment
are diminished in the hands of conventional Doctors (if your medical history
is considered) to my opinion, at this point.
So the aforementioned option, is what I would pursue, if I were in your situation.
Please note that my comments are not intended to replace medical advice.
Wishing you well.
Niko
A positive ANA is NOT necessary for a dx, according to American College of Rheumatology.
Unresolved anemia co-relates with low thyroid function, which could go on being undiagnosed, even if standard thyroid testing indicates otherwise.
Serum thyroid testing tsh, T3 & T4 are flawed.
One needs Free T3, Free T4 AND Reverse T3 to fully rule in or out low thyroid function.
My suspicion is that you may have:
a. low adrenal function because of chronic biological and external stress, causing dysregulated cortisol levels and secondary hypothyroidism.
b. low grade chronic pathogenic infectious condition (pathogenic mycoplasma and any of its co-infections). Do a search here in MedHelp for Dr. Garth Nicolson and expert in this field and part-time MedHelp contributor.
Also please note that Cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
Have you ever been tested for celiac's and wheat/gluten intolerance or sensitivity? That should be ruled out as well.
Leaky gut syndrome and Candida are other possibilities, but these are not within the "established" scope of conventional medicine.
If you need details for testing regarding the above, let me know!
Lupus may be a natural progression of unresolved low thyroid function and
untreated (& likely undetected) pathogenic infections as mentioned above, where the most vulnerable organs/systems get affected first.
You will need a Dr. House type of Holistic Medicine Practitioner or Naturopathic Doctor to guide you back to better health.
Most conventional specialists do not converge effectively, when too many
unanswered questions still exist in the various relative fields to your case.
Your chances of a firm diagnosis and consequent effective treatment
are diminished in the hands of conventional Doctors (if your medical history
is considered) to my opinion, at this point.
So the aforementioned option, is what I would pursue, if I were in your situation.
Please note that my comments are not intended to replace medical advice.
Wishing you well.
Niko
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