Aa
mystery illness
I am posting this to see if anyone has a lead to what is happening to my 14 yr old daughter
last aug she began blacking out and has a lupus like rash on her face. began taking her to doctors and the only thing we could find was a slightly elevated tsh and low vit d (hashimotos) she began with many foggy brain issues bowel issues and menses stopped. she began sweating from her head only ( dripping) and i suspected a tumor after months of fighting for a ct scan they were forced to do one when extreme pain began in the cranial 5 and 7 nerve. the found a large fibrous dysplasia tumor above her left eye> the rash on her face increased and pain worsened ( clear fluid began leaking out of the nose and it burns the skin. RSD was diagnosed she then began vomiting all day and her skin peels off leaving large scars. she gets rashes that look like small purple bug bites.she struggles to get a satisfying breath and has extreme joint pain and stiffness... we have ruled out lupus and ms and endocrine does not believe any of the symptoms come from the hashimotos nor do they believe it comes from the rsd. there is no eveidence of arthritis. everyone is at a loss at the childrens hosp here and i fear she will die before we figure it out. any thoughts?
last aug she began blacking out and has a lupus like rash on her face. began taking her to doctors and the only thing we could find was a slightly elevated tsh and low vit d (hashimotos) she began with many foggy brain issues bowel issues and menses stopped. she began sweating from her head only ( dripping) and i suspected a tumor after months of fighting for a ct scan they were forced to do one when extreme pain began in the cranial 5 and 7 nerve. the found a large fibrous dysplasia tumor above her left eye> the rash on her face increased and pain worsened ( clear fluid began leaking out of the nose and it burns the skin. RSD was diagnosed she then began vomiting all day and her skin peels off leaving large scars. she gets rashes that look like small purple bug bites.she struggles to get a satisfying breath and has extreme joint pain and stiffness... we have ruled out lupus and ms and endocrine does not believe any of the symptoms come from the hashimotos nor do they believe it comes from the rsd. there is no eveidence of arthritis. everyone is at a loss at the childrens hosp here and i fear she will die before we figure it out. any thoughts?
Having had a look at the photographs, with the history of photosensitivity,neuropathy,and joint pains Urinary and serum porphyrin levels need to be studied to rule out porphyrias.Porphyria should be considered and ruled out in the many patients who have compatible symptoms but may turn out not to have Porphyria.
after weeks in hospital the docs have decided
her levels are not messed up enough thyroid wise for this to be caused by the thyroditis.
on paper she looks like she has lupus but they have ruled this out as her ana is fine
i have said sinece the beginning this is pediatric lymes and have been told it is not and past the poor elisa test ( which often has false negatives) they will not help me
any suggestions?
her b12 is fine and her vit d has been normal after starting supplements a year ago
the entire list above was ruled out according to doctors as her blood work is insanely normal
the doctors are now waiting for "another major symptom" to help put the puzzle together
they do not seem concerned about the fluid from her nose which they have not tested and seems to be put on the back burner
her levels are not messed up enough thyroid wise for this to be caused by the thyroditis.
on paper she looks like she has lupus but they have ruled this out as her ana is fine
i have said sinece the beginning this is pediatric lymes and have been told it is not and past the poor elisa test ( which often has false negatives) they will not help me
any suggestions?
her b12 is fine and her vit d has been normal after starting supplements a year ago
the entire list above was ruled out according to doctors as her blood work is insanely normal
the doctors are now waiting for "another major symptom" to help put the puzzle together
they do not seem concerned about the fluid from her nose which they have not tested and seems to be put on the back burner
I would like to rue out pediatric 'Lyme Disease'(Tick bite) which your child possibly could have, and is eminently treatable.
Causes of butterfly rash across the cheeks include:
* Discoid lupus erythematosus
* Systemic lupus erythematosus
* Rosacea
* Seborrheic dermatitis
* Dermatomyositis
* Polymorphous light reaction
* Cushing's Disease
* Reaction to medication
* Eryisipelas
* Photosensitivity
* Chemical sensitivity
* Sunburn
* Erythema infectiosum
* Human parvovirus B19 infection
* Lyme's Disease
* Bloom Syndrome
* Sarcoidosis
* Niacin (vitamin B3) deficiency
* Pantothenic acid (vitamin B5) deficiency
Seborrheic dermatitis is a listed cause of peeling skin. Rosacea is a listed symptom of hypothyroidism (Hashimoto's Thyroiditis is the most common cause of hypothyroidism).
The clear fluid from the nose may be cerebrospinal fluid (CFS). Acquired CFS leaks can be caused by head or spine injury, surgery, infection or tumour.
Bone and joint pain are symptoms of vitamin D deficiency. To rule these symptoms out as a cause, make sure vitamin D levels are optimal - 80ng/ml or 200nmol/l.
Hashimoto's Thyroiditis is sometimes seen with other autoimmune diseases such as:
Pernicious anaemia
Addison's disease
Type 1 diabetes
Graves' disease
Rheumatoid arthritis
Celiac's disease
Lupus
Vitiligo
40% of hypothyroid patients were found to be deficient in vitamin B12 in one clinical trial (due to low stomach acid). Vitamin B12 deficiency includes some of the symptoms you mention such as blackouts, brain fog, vomiting, breathlessness, IBS symptoms, affected menstrual cycle.
Vitamin B12 deficiency can also cause petachaie and/or purpura. Petachaie is small red dots on the skin (under 0.3mm) and purpura is larger purplish discolourations (0.3mm - 1cm). It may be that the small purple like rash you mention is purpura. There are many other conditions that cause purpura however.
Optimal B12 serum is over 800pg/mL or 600pmol/L. A more accurate test to aid in diagnosis is of a B12 deficiency state is a urinary methylmalonic acid test. Methylmalonic acid rises just 10 days after a B12 deficiency starts.
* Discoid lupus erythematosus
* Systemic lupus erythematosus
* Rosacea
* Seborrheic dermatitis
* Dermatomyositis
* Polymorphous light reaction
* Cushing's Disease
* Reaction to medication
* Eryisipelas
* Photosensitivity
* Chemical sensitivity
* Sunburn
* Erythema infectiosum
* Human parvovirus B19 infection
* Lyme's Disease
* Bloom Syndrome
* Sarcoidosis
* Niacin (vitamin B3) deficiency
* Pantothenic acid (vitamin B5) deficiency
Seborrheic dermatitis is a listed cause of peeling skin. Rosacea is a listed symptom of hypothyroidism (Hashimoto's Thyroiditis is the most common cause of hypothyroidism).
The clear fluid from the nose may be cerebrospinal fluid (CFS). Acquired CFS leaks can be caused by head or spine injury, surgery, infection or tumour.
Bone and joint pain are symptoms of vitamin D deficiency. To rule these symptoms out as a cause, make sure vitamin D levels are optimal - 80ng/ml or 200nmol/l.
Hashimoto's Thyroiditis is sometimes seen with other autoimmune diseases such as:
Pernicious anaemia
Addison's disease
Type 1 diabetes
Graves' disease
Rheumatoid arthritis
Celiac's disease
Lupus
Vitiligo
40% of hypothyroid patients were found to be deficient in vitamin B12 in one clinical trial (due to low stomach acid). Vitamin B12 deficiency includes some of the symptoms you mention such as blackouts, brain fog, vomiting, breathlessness, IBS symptoms, affected menstrual cycle.
Vitamin B12 deficiency can also cause petachaie and/or purpura. Petachaie is small red dots on the skin (under 0.3mm) and purpura is larger purplish discolourations (0.3mm - 1cm). It may be that the small purple like rash you mention is purpura. There are many other conditions that cause purpura however.
Optimal B12 serum is over 800pg/mL or 600pmol/L. A more accurate test to aid in diagnosis is of a B12 deficiency state is a urinary methylmalonic acid test. Methylmalonic acid rises just 10 days after a B12 deficiency starts.
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