Discussions By Condition: I cannot get a diagnosis.

chronic fatigue syndrome diagnosed...

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • June 13, 2007
  • 04:52 PM

I hope this helps at least one other chronic fatiguer out there. I have been suffering from something horrible for eight years now, all while trying to finish up medical school of all things, and along the way, being fed Paxil like they were tic tacs.

My symptoms began as subtle problems with my balance, tingling in my extremities, fatigue which would leave me wiped out, headaches- would get migraines at the drop of a hat, swollen lymph nodes in my neck, sore throat, dizziness, lightheadedness.

The symptoms were so disabling! I thought I was headed for a wheelchair, and a motorized one at that because I didn't think I'd have the strength to push my own... and I used to be an avid hiker- 10 mile hike? -no problem. That was a thing of the past...

Due to all the subtle neuro symptoms (fast reflexes, problems walking heal to toe), I've been repeatedly worked up for MS- including the spinal tap- ouch! There's nothing more frustrating than being an udiagnosed neuro case when your symptoms are subtle and fleeting and look so much like "chronic fatigue syndrome"...

In the mean time, it kind of felt like my neck was getting fuller and fuller.The lymph nodes seemed to be growing and eventually my voice got hoarse and I had a hard time swallowing. These symptoms should have been raising all kinds of red flags for my primary doc, but she was asleep on the job, thinking that the specialists would diganose me and she didn't have to think about it or put all the numerous clues together.

Well, eventually I got routed to a movement disorder neurologist who ordered up thyroid antibodies (thyroglobulin antibody and thyroperoxidase antibody), even though my thyroid hormones had always checked normal.

Sure enough, they were positive. I have something called Hashimoto's Encephalopathy, also known as SREAT (steroid responsive encephalopathy associated with autoimmune thyroiditis). It's kind of rare, but is related to a much more common disease, Hashimoto's thyroiditis. Because of the neck swelling, a thyroid ultrasound was done and it showed nodules in my gland, indicating that I am in the process of losing my thyroid function and have the thyroiditis, too (Hashimoto's thyroiditis can progress through several stages- the first one is where your gland is being destroyed and dumps a lot of thyroid hormone into your bloodstream making you jittery and your heart race, etc. then you pass through what can be a long period where your gland is still under attack but your hormone levels are normal, eventually you lose your gland function and become hypothyroid). The thyroid hormones are usually normal in SREAT.

The treatment for the encephalopathy part is steroids, and the prognosis is good. I'm still on the steroid taper and I think that once I get my thyroid hormones straightened out (I started having worsening symptoms of hypothyroidism before starting treatment, which is bad because steroids can suppress your thyroid function, hee hee), I'll be cured!

I hope my story helps someone out there with all my crazy symptoms. Don't let them feed you antidepressants if you know deep inside that you are chronically ill.


The above was an original thread from a few weeks ago. Someone had asked me to copy and paste it into this forum, so that it may help more people. I have since tapered off the steroids and have stopped walking with my cane. My fatigue improved- the vibrating weekness in my legs that had bothered me for at least 6 years is now gone.

I have done an extensive search of the medical literature to see if anyone is studying whether chronic fatigue syndrome may actually be a mild case of what I have: Hashimoto's Encephalopathy. I found some researchers in the UK who have looked into it. So far, they do appear to be separate diseases, because when you look at tissue from CFS sufferers and HE sufferers under the microscope, they look different.

However, I do think that people with chronic fatigue should probably have Hashimoto's encephalopathy ruled out (by getting thyroid antibodies checked even when the thyroid hormone levels are normal), since HE is treatable with steroids (make sure you go to an endocrinologist prior to starting the steroids, though).

During my literature search, I did notice that chronic fatigue syndrome is taken much more seriously in the UK, and they refer to it as "myalgic encephalopathy", which is great because clinically, it does seem to resemble an encephalopathy given all the headaches, memory problems, fatigue, and subtle neuro symptoms.

Good luck to everyone out there with chronic fatigue syndrome. Though my answer (Hashimoto's Encephalopathy) may not be your answer, please know thta if you are patient enough (and it's so hard when you wake up feeling like crap every day and people- doctors included- start to think you are faking your illness), you will get your answer.


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2 Replies:

  • Dear elke, thank you for posting this. There are many in this forum having ME/CFS symptoms. Thank you for sharing your story to help others who are in need.I woould recommend looking into NAET or Bioset therapy. It is non-traditional, new and very exciting. I have CFS and went the other day for my first session. It is not expensive, noninvasive and "resets" your internal mechanisms.It sounds crazy but it works, I swearBe Well and congrats on getting rid of the vibrating weakness in your legs.You can't believe how many symptoms the therapies mentione above will help.
    Anonymous 42,789 Replies Flag this Response
  • Yes, thank you for posting this informative thread. I've noticed there are a lot of people here with a lot of similarities. I, myself am sick and looking for help. I seem to have similar symptoms to you.
    Anonymous 42,789 Replies Flag this Response
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