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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    I am saving all this information and my doctor is reviewing it as we speak--after hours--on personal time. I plan to come back sometime in the future with some great news! Thanks guys!
  2. M

    Burning on Head and Spine is driving me crazy

    Inester, Hi. Have you ever had a spinal tap before? Your neuro could determine if you should have one or not. Hope it gets better.
  3. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Thanks to everyone who has replied on this thread and to the people who e-mailed me as well. You all have no idea what this means to me. The caring support and the information is more than I've received from these doctors for almost 2 years. I will definitely let you all know what happens and...
  4. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Thanks Ema. I've written these tests down, printed everything, etc. And I will definitely get on it. I'll let you guys know what happens.
  5. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Rlc, Wow. Thank you so much for taking the time to give me all this information. You don't know what it means to me. As for the Ferritin Serum, the level is 192; refernce range is 13-150. Iron Saturation (there's nothing on the report that says exactly what you listed) is 22 and the range...
  6. M

    shocked by what hubby and counselor said at my vist and sad : ( any advice?

    Hurtingallthetime, Hi. I agree with everyone when they say it's time to seek a new counselor. I think someone mentioned finding someone who is experienced with your condition. A true counselor listens more than they talk and is respectful of one's feelings. I used to be a mental health...
  7. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Googsta, I'm confused as well...lol. I stayed in the hospital under observation and was hooked up to an EEG all week. I was slowly taken off medication and during that time, I had a partial seizure, and they came to the conclusion--it was epilepsy, even though I didn't agree. My neurologist...
  8. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Nanonug, I'm taking your and Ema's advice on the thyroid issue. And I already have an LB scheduled to look at infection. Thanks so much for the valuable information! Hopefully I'll have some good news to share!
  9. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Ema, Thanks for the information. :Retro eek: I would have never guessed that a freakin' doctor who specializes in it wouldn't know. **sigh** I found my paperwork. My TSH is 3.3 and he said on it, "Good! It's normal!" And my free T4 is 1.1. He did not look at the free T3. I did begin research...
  10. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Googsta, Hi. I was diagnosed with epilepsy, but of course they couldn't explain my other problems. I have copies of all of my tests. I have copies of all 3 MRI's, EEGS, labs, etc. When I tried to stop my meds during an observation--for a week like yours--I had a partial seizure, and they...
  11. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Rlc, Hi. I've been checked for diagnosed for diabetes several times, and I'm in a perfect range. I haven't had my PTH tested. I didn't know I had a vitamin D deficiency until months after the seizures, while all kinds of tests were being performed. I am taking vitamin D. I have been...
  12. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Alex, Thanks for your input. My iron was low, but my hematologist said it's in a good range and he checked my complete iron levels. I've read lots about folic acid since my problems started. It's as if doctors don't want to believe that it can be harmful.
  13. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Ema, Hi. As for the thyroid, my endocrinologist tested me again. Sorry, I should have clarified. The test I listed was done by my primary doctor, who then sent me to the endocrinologist. He did say I had hypothyroidism and tested me again (last summer), but this time, the number went down in...
  14. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Kurt, I'm glad to have found someone with really similar issues; not that I want either of us to be sick, but it's good to know that someone can relate and not think I'm crazy like the doctors do. I always mention the folic acid and get ignored. I was diagnosed with epilepsy--focal...
  15. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Hixxy, My myoclonic jerks got worse after the seizure. They are a normal response to have like when you nod off at school, home, a boring meeting, etc. But I've never had such intense jerks, like I do now. And the frequency has increased as well. I hope you get your answers as well.
  16. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Nanonug, Hi. After the folic acid in 2010, I got rid of a lot of things. I was freaked out. I took the B6 because of tingling and numbness. It was recommended by my doctor years ago for those problems, and since they returned, I picked it up when I picked up the folic adic. The folic acid...
  17. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Hi Sushi, I haven't checked for blood pressure or pulse changes while engaged in activities. Shortly after having the first seizure, I did experience fatigue. I slept longer than normal, was just tired all the time, etc. I don't really feel that way now, but sometimes I do, and I don't know...
  18. M

    I Don't Have a Diagnosis. Someone Help, Please! Freddd?

    Hello all, I wish I was here under more pleasant circumstances. :Retro frown: Any information anyone can provide me with, I will greatly appreciate. Here's my story: I began taking vitamins B6 (100mg) and Folic Acid (400 mcg) on approximately September 6, 2010. On September 11, 2010, I...