Discussions By Condition: I cannot get a diagnosis.

Autoimmune disease? Please help!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: sarahl1976
  • August 21, 2007
  • 06:16 PM

It all started on July 13th, 2006. I was trying to read and noticed that there were spots blocking what I was trying to read. Furthermore, I had multiple floaters in both eyes. Other symptoms are as follows:

Neck/Head pain/tremor
Scalp pain can barely brush hair sometimes
Easy muscle fatigueability
Uncontrolled eye movements
Double vision at times
See holes/obstructions/spots/flashes in my visual field
When I look, still objects appear shaky or moving when they are not.
Pain behind eyes
blurry vision
Increased sweating sometimes at night
Ears ringing/humming a lot very noticeable at times
Distorted sounds - sound like people are yelling when they are talking quitely
vertigo/dizzeness
developed a few hundred freckles practically overnight
now have a few patches of hypopigmentation on skin
skin is very very dry
hypotension/tachycardia when standing or walking

I have had test for Grave's Disease; Radioactive iodine uptake,thyroid ultrasound, TSH blood tests, antibodies test, etc. TSH was low, normal T3T4, had some lesions on the ultrasound which endo dr. deemed "normal" had an increase on scan suggestive of Graves. Endo dr. says that I have no thyroid issue and sent me to neuro. I have had 3 MRI - all normal. Many blood tests, two lumbar punctures - normal. I've had an acetycholine test for myasthenia was negative. I've had blood tests for lupus, connective tissue diseases, all normal.

Originally, dr's told me I had migraines, now I am told "we don't know what is wrong with you"
Other issues I have before all this started were:
Mouth apthous ulcers all the time
Food intolerances/allergies
Multiple environmental allergies
Migraines as a child.

I'm assuming whatever I have is autoimmune - I never run a fever and some syptoms recur then resolve for a bit. I feel as though I've been given up on plenty of times. I would appreciate any insite anyone has to offer.

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7 Replies:

  • Dear Sarah, I had all of your symptoms too...every one. I have chronic fatigue syndrome. Has this been ruled out by a doc? It is often overlooked or not even considered by some docs. You can google the symptoms of it. Yours will be there. I went for Bioset therapy which is an off-chute of NAET. Google it. Try to find someone in your area and Go. I am headed back to work for the first time in over a year since my symptoms are 90% resolved. Trying to help,mommy cat
    mommy cat 1654 Replies
    • August 23, 2007
    • 01:29 PM
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  • Sarah, here is a lst of CFS symptoms. Hope this helps you. Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacuity, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ). also, dry skin, nightsweats and areas of hypersensitivity are included even though not listed above. I know, I had ALL of it. I went for NAET/Bioset therapy and my symptoms are 90% resolved. My doctor is impressed to say the least.This illness was ruining my life, Someone in this forum recommended it and I went. I'm so glad I did. www.naet.com take a look. where do you live? I will help you find someone in your area. Best regards,mommy cat
    mommy cat 1654 Replies
    • August 23, 2007
    • 01:40 PM
    • 0
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  • vestibular hyperacusis?
    rad-skw 1605 Replies
    • August 24, 2007
    • 08:57 AM
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  • Thank you for you post! Vestibular hyperacuis - it could very well be. I was told in March that I was having recurring bouts of vestibular neuritis, cause unknown. This time, I have a bad sinus infection and it makes my eye movements and dizziness a lot worse. The only issues it doesn't explain are the holes/lines/flashes in my visual field. Unless, that is what is meant by "seizure-like activity" in the brain. It's a constant in my visual field. I am going to see the ENT/Immunologist middle of September and I will be sure to ask him. I didn't even think about looking at vestibular issues until March. From last July - March 2007 I wasn't having the dizziness or anything like that, but did have the jerky eye movements. It's possible that another autoimmune condition set this one in motion. I know I need to be tested for Celiac - I have multiple food and environmental allergies/intolerances; including wheat, corn, cow's milk - the list goes on and on. Thanks again for the post :)
    sarahl1976 19 Replies
    • August 24, 2007
    • 11:21 AM
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  • As for CFS, I'm not to sure this covers my illness. I did some research and couldn't find anything regarding random eye movements and the visual issues I am having. I did see dry eyes, blurry vision, etc. I don't think this is what I have. Thank you for this information though!
    sarahl1976 19 Replies
    • August 24, 2007
    • 11:22 AM
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  • Sarah, here is a lst of CFS symptoms. Hope this helps you. Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacuity, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ). also, dry skin, nightsweats and areas of hypersensitivity are included even though not listed above. I know, I had ALL of it. I went for NAET/Bioset therapy and my symptoms are 90% resolved. My doctor is impressed to say the least.This illness was ruining my life, Someone in this forum recommended it and I went. I'm so glad I did. www.naet.com take a look. where do you live? I will help you find someone in your area. Best regards,mommy catPlease people! Does anybody out there realize that "fibromayalga" and CFS is nothing but "shadow" deceases? ALL of the symptoms for these two can be linked to some kind of problem with the thyroid. Kelp, people, Kelp. It can help support the thyroid, but of course has not been tested and approved by the FDA because they want yr money and want you sick and dependent on them. Just remember, there is no money in the cure and there is no cure for the sick....
    Anonymous 42789 Replies
    • October 9, 2009
    • 01:46 AM
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  • You must have Behcets disease...apply to a rheumy...good luck
    Anonymous 1 Replies
    • September 30, 2015
    • 08:55 PM
    • 0
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