Discussions By Condition: I cannot get a diagnosis.

Lots of symptoms - no diagnosis

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • March 26, 2007
  • 11:22 AM

My 14 yr old daughter has the following symptoms:

- Osteopenia (bonescan diag)
- Hydromyelia in spine since birth - no neurological symptoms -Neuros believe this is not having an input as it is too small and symptoms dont match
-Knee and ankle joint pain without redness or swelling (at times severe enough to necessitate wheelchair) - remissions and flare-ups (pains last 2-6 months flaring up every 2-4 years)
- Low blood pressure (75/45)
- Erosions in jejunum (video pill, ab ct diag)
- Low body temp (97)
- Underweight (5', 80 pounds)
- Under growth potential (genetic potential 5'5)
- Underperforming academically (at 5 had 133 iq, at 8 had 115 iq, currently c-d student in basic classes despite effort
- Brain fog, poor short term memory
- Hashimoto's thyroiditis
- Cat allergy (all other IgE normal, awaiting IgG results)
- Fibromyalgia tender points 2 years ago but not presently
- Period absent when joint pain flares up

blood tests normal
echocardiogram normal
celiac markers ruled out
lyme disease ruled out by western blot
C reactive protein low at 4 so no inflammation
Rheumatoid factor neg

Is taking many supplements for osteopenia and joint pain along with multivitamin.

any ideas???????????

thanks - any input appreciated

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11 Replies:

  • Is your dau being treated with meds for the Hashi's Thyroid??? Everything you are saying is linked to the thyroid. The low body temp esp. I know you said Lyme was ruled out, but many times the tests give false negs. Was she tested for the co infections of babesia, borriella, bartonella, etc, some of them cause low body temps too. You could do some searches, there are some great sites with good info.Best wishes..
    Anonymous 42789 Replies Flag this Response
  • Hi, thanks for the reply! Actually, her thyroid hasnt been checked since they first found the hashi's...def time to test it again...now i know to ask for free t3 and t4 becoz of this site! i just dont know what to do about lyme...i know the bowen test always is positive for EVERYONE, so there's no point in even doing it. the only other good test i know is western blot...she has also been tested for all of the other tick diseases when she was at miami children's hospital (a really excellent hospital) and they were all negative. last time this happened the GI dr treated her for parasites without testing first, and that is around when she turned the corner and started to improve. This time he is testing her first before treating to see if that is the source of the problem. We were in Mexico living in a private home for many weeks during the summer over a number of years when she was younger, so right now that is the best guess. The GI said he is much more concerned about her weight than her joints, and ordered a number of tests including amylase, lipase and B12. i'm happy to see he's trying. thanks again for the reply
    Anonymous 42789 Replies Flag this Response
  • Sounds eerily familiar to me, a thyroid condition should not go untreated! Has there been further thyroid tests or just blood work? An ENT (ear/nose/throat) and an endocrinologist will know a lot more about these things then your GP. There are blood test to check for inflammation too, just because there is no swelling doesn't mean no inflammation. If you'd like to compare symtoms and progression I can post a quick over view of my experiance. Good luck.
    Kyanite 3 Replies Flag this Response
  • Sure, I'd love to hear your experience. Any insight I can gain is valuable. i will definitely follow-up on getting thyroid tested. She has a follow-up with endo in a month. She has had thyroid tested but not for two years now. thanks again
    Anonymous 42789 Replies Flag this Response
  • My 14 yr old daughter has the following symptoms:- Osteopenia (bonescan diag)- Hydromyelia in spine since birth - no neurological symptoms -Neuros believe this is not having an input as it is too small and symptoms dont match-Knee and ankle joint pain without redness or swelling (at times severe enough to necessitate wheelchair) - remissions and flare-ups (pains last 2-6 months flaring up every 2-4 years)- Low blood pressure (75/45)- Erosions in jejunum (video pill, ab ct diag)- Low body temp (97)- Underweight (5', 80 pounds)- Under growth potential (genetic potential 5'5)- Underperforming academically (at 5 had 133 iq, at 8 had 115 iq, currently c-d student in basic classes despite effort- Brain fog, poor short term memory- Hashimoto's thyroiditis- Cat allergy (all other IgE normal, awaiting IgG results)- Fibromyalgia tender points 2 years ago but not presently- Period absent when joint pain flares upblood tests normalechocardiogram normalceliac markers ruled outlyme disease ruled out by western blotC reactive protein low at 4 so no inflammation Rheumatoid factor negIs taking many supplements for osteopenia and joint pain along with multivitamin.any ideas??????????? thanks - any input appreciatedLet me just say NAET.Search all posts with the NAET word in this website- alsogo to naet.comfind a NAET specialist near you, by searching for it only at NAET.comI can have a 4 hour conversation about it- I think your child is not absorbing some nutrients ( like Vitamin B complex, perhaps calcium) and might have bad environmental allergies ( to chemicals).NAET give the life back- to even the ones who have been sick since birth ( like me).I am about to email Tony Braxton and tell her that I think her sick son needs NAET. I am so serious.Best,
    Eatafruit78 960 Replies Flag this Response
  • Thanks, Actually I have researched NAET. I like the sound of it - certainly sounds like it can do no harm, however when I checked the NAET website I learned that the practitioners near me who do it have had like one or two classes. According to the site they dont get anywhere near her level of symptoms till the advanced level classes. So, I kinda gave up there on it.
    Anonymous 42789 Replies Flag this Response
  • Thanks, Actually I have researched NAET. I like the sound of it - certainly sounds like it can do no harm, however when I checked the NAET website I learned that the practitioners near me who do it have had like one or two classes. According to the site they dont get anywhere near her level of symptoms till the advanced level classes. So, I kinda gave up there on it.Actually - it is okay to go visit them with only one or two levels. Just the first level can help tons! I was allergic to essential nutrients- like sugar, calcium, vita B complex,egg, red meat, grains, corn- what a mess- just by coaching the body to accept the vitals, uff my body went back to balance by 80%- now I can function and I have been able to point the finger at my other allergies, such as Polyester and chemicals- but even my emotions and attitudes have changed. I am more peaceful and I feel more will to live, learn, and share- I am sure that checking for vital nutrients is a great start for your child.I was taken 3 and 4 pills of multivitamins a day- because my body was not accepting the nutrients- now I only take 1 (half a dosage) a day and I feel strong.You never know, because NAET is a gradual treatment, maybe by the time that your child needs the advance level, the specialist will be completing the training on it.I hope you try it soon!SincerelyEatafruit78.If you want to email my NAET doctor with questions, let me know.
    Eatafruit78 960 Replies Flag this Response
  • Okay, you've convinced me (doesnt take much, I am really open to anything at this point) - I'll take another look at the site and pick the person whose got the most amount of classes. My daughter is definitely going to find it flakey, but I'm sure she'll enjoy it. Thanks a lot.:)
    Anonymous 42789 Replies Flag this Response
  • Hello Fauve- just wanted to check on your daughter- find out how she is doing.Have a good day.
    Eatafruit78 960 Replies Flag this Response
  • Just wanted to put my two cents in on NAET - it really is a fantastic treatment. I have only had two treatments, and it's made a huge difference in my overall health and I just feel my immune system is stronger. I am a Doctor of Oriental Medicine and often use acupuncture to help me, but this takes my health to a whole new level! Hoping to take the first level class at the end of summer. It is very daunting, as there are many levels of classes and it is expensive...but I know I can help many people and it is encouraging to hear that even after only one class I'll be able to start helping them. I do recommend Dr. Namburidpad's self help acupressure book Living Pain Free with Acupressure. You can get this on Amazon - very helpful! Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Just wanted to put my two cents in on NAET - it really is a fantastic treatment. I have only had two treatments, and it's made a huge difference in my overall health and I just feel my immune system is stronger. I am a Doctor of Oriental Medicine and often use acupuncture to help me, but this takes my health to a whole new level! Hoping to take the first level class at the end of summer. It is very daunting, as there are many levels of classes and it is expensive...but I know I can help many people and it is encouraging to hear that even after only one class I'll be able to start helping them. I do recommend Dr. Namburidpad's self help acupressure book Living Pain Free with Acupressure. You can get this on Amazon - very helpful! Best wishesDOMGood for you! NAET is so ahead of its time- you must be excited to study NAET.I often praise my NAET practitioner because I know it is so hard to find someone like her- who has the right background, who has specialized in Oriental Medicine, it is sweet but very very calm and strong but gentle.Since I already chose my career several times- and keep switching, I won't be switching to be a NAET practitioner ( it is not related with any of my previous fields)- but it is awesome. So I decided I am going to study Reiki. I want to be an energy healer. I don't want to do it as my full time job, I just want to do it as one chooses to be a volunteer firefighter, a mentor, godmother fairy, or best friend. I just think it can help people, plants and animals around. Have a great day everyone!
    Eatafruit78 960 Replies Flag this Response
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