Fibromyalgia and benign tonsillar ectopia but normal test results

[jledenney]

For 4 years I've been experiencing random bouts of pain and confusion. Last January I started having numbness and pain in my thighs upper arms. This January the numbness was so extreme I was in shorts and t-shirts in 40 degree weather and couldn't feel the cold. The pain was so bad my son couldn't tap on me and clothes were even painful. I started having stroke like symptoms during this time. I had a mirena and it had to be removed after 4 years. Some of the symptoms alleviated but still were present. I was also experiencing double vision.

I was diagnosed with benign tonsillar ectopia, fibromyalgia, vitamin d deficiency, and hypoglycemia in June after changing doctors. I was prescribed vitamin d 5000 units and Gabapentin 300mg Capsules. Pain has reduced but numbness and disorientation still there. My hands also go completely numb periodically. Had an eye exam and further testing on my vision. Nothing explained the double vision. All tests to include spinal tap and EMG show normal. The strange thing is my legs felt great after the EMG, they usually feel like 100 pounds each. My skin also feels on fire. The neurologist stated it my condition doesn't match the severity of my complaints.

Not sure what to think. I'm being referred to Emory and no longer allowed to drive. I hate communicating in any form because of energy to process my thoughts into words and constant re explaining because I wasn't understood. I stand around lost in my usual surroundings. I still have breakthrough pain. Peripheral numbness that is permanent and my hands going numb from time to time.

I'm only 35 and we have a 5 year old son with  high functioning Autism. My condition is adding to all the stress.

Any ideas?

[TheLightSeeker]

Your stress is adding to your condition!
Get a functional adrenal stress profile (saliva test, 4 times cortisol,    2 averaged DHEA-S)
See BioHealthLabs website for details.
If your results come back positive, you may also have secondary hypothyroidism.
I would also recommend you look into the "GI Pathogen Screen",  especially if your cortisol levels come back low.
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.
Some of your symptoms are consistent with Adrenal fatigue,
vitamin D deficiency despite supplementation ( likely due to high cholesterol demand by the adrenals), & Methylocobalamin B12 deficiency-NOT cobalamin B12 levels from standard testing!!!
Methylocobalamin levels could be low while cobalamin B12 (needs conversion to methylocobalamin) levels are normal or even high!
To test for Methylocobalamin you need to ask for an MMA test.
Also you must rule out Candida (you can do a self-screening
by doing your own saliva test for candida-just look it up and repeat twice at least), Hypothyroidism type 1 and 2
(ask for Free T3, Free T4 and Reverse T3 tests ), wheat and gluten intolerance (you may want to do an elimination diet
starting with wheat and gluten).
Lastly there's the possibility of low methylation.
You need to test your homocysteine levels, at least 2-3 times
in order to establish a pattern and also the MMA test for Methylocobalamin, tests for Methylfolate. The latter 2 are
the neurological bioavailable forms of cobalamin B12 and folate and when are both are low they cause low methylation .
The above imbalances are very fundamental and should any of these are present and not corrected, your recovery, unfortunately, is extremely unlikely taking only conventional
drugs for symptom relief.
A knowledgeable ND or functional medicine doctor would be the type of doctor to help you with this.
I suspect you have a MTHFR gene mutation (or similar, linked to methylation deficiencies) being presently expressed, which BTW was passed  to your son, part of the Autism underlying aetiology.
I hope this helps and please let me know if you need any more details.
Best wishes,
Niko