Discussions By Condition: Medical Stories

"chronic fatigue syndrome" diagnosed

Posted In: Medical Stories 16 Replies
  • Posted By: Anonymous
  • May 21, 2007
  • 10:14 AM

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.

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16 Replies:

  • I can relate. I have recently been diagnosed after a long illness and what seemed to be several, unrealted issues.
    Anonymous 42789 Replies Flag this Response
  • Conventional Medicine does not cure CFS.To cure CFS you need to read "Never Be Sick Again", you need from 15 to 50 treatments of NAET and some Reiki.Best.
    Eatafruit78 960 Replies Flag this Response
  • Trying to finish Med School with CFS? God Bless you. That's a feat in itself.
    Anonymous 42789 Replies Flag this Response
  • Dear elke, would you mind copying and pasting this thread under the "I cannot get a diagnosis" portion of this forum? I understand you have your diagnosis but many don't. I think your information here would be very helpful to others, there.Please list your symptoms if you would, for there are many having CFS symptoms. Some don't "buy it", others are probably having a hard time figuring it all out.I Thank you in advance
    Anonymous 42789 Replies Flag this Response
  • It sound like you have chronic fatigue "immune dysfunction" syndrome. You need to read Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Johnson). Your symptom of encephalitis can only be successfully treated (meaning, to recovery) with an antiviral. I have had CFS my whole life. began getting sick after being vaccinated. I've also been hypothyroid and had debilitating dysmenorrhea since menarche at 11. EVERYTHING cleared up after 6 years on Famvir (by the way, I developed, like everyone profiled in the book, AIDS and had 3 negative HIV tests; you will see in the book that Elaine DeFrietas of the Wistar Institute discovered one retrovirus, of class HTLV-II, in all patients referred to her with CFIDS).That's the good news. Now the bad.You won't get better being tested ad infinitum to see how you perform under specious stress tests (tilt table). You won't get better treating your food allergies, your instability with salt tablets, etc. AND all of the people who claim to represent your interests in the medical community or congress (CFIDS Association or National CFIDS Association) are gatekeepers. You're an outsourced bioresearch subject for the government.Take care.
    Anonymous 42789 Replies Flag this Response
  • It sound like you have chronic fatigue "immune dysfunction" syndrome. You need to read Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Johnson). Your symptom of encephalitis can only be successfully treated (meaning, to recovery) with an antiviral. I have had CFS my whole life. began getting sick after being vaccinated. I've also been hypothyroid and had debilitating dysmenorrhea since menarche at 11. EVERYTHING cleared up after 6 years on Famvir (by the way, I developed, like everyone profiled in the book, AIDS and had 3 negative HIV tests; you will see in the book that Elaine DeFrietas of the Wistar Institute discovered one retrovirus, of class HTLV-II, in all patients referred to her with CFIDS).That's the good news. Now the bad.You won't get better being tested ad infinitum to see how you perform under specious stress tests (tilt table). You won't get better treating your food allergies, your instability with salt tablets, etc. AND all of the people who claim to represent your interests in the medical community or congress (CFIDS Association or National CFIDS Association) are gatekeepers. You're an outsourced bioresearch subject for the government.Take care.Wow-Thanks for your reply.I was wondering, did you recover completely?How did you get the antiviral? Who prescribed to you?I was on Oil of Oregano- 6 capsules a day for a week. That took a lot of it away. But I ended having hormonal and allergies that did not clear all.I am happy with my progress, but I am very interested to know what kind of doctor treated you with antivirals.Thanks!Fruity.
    Eatafruit78 960 Replies Flag this Response
  • Try taking olive leaf extract pills found at a health store. You need to find some with a good % of oleuropein; like 18%. I also have been rung though the ringer with doctors and they only could come up with guesses to what was wrong with me. I started taking two pills in the morning and two at night. It runs about $18 a mouth for the olive leaf, but its the only thing that makes me feel normal again. If I go off it for more than a week the symptoms start coming back. I'm guessing I will have to take this the rest of my life. Its better than feeling like crap though.
    Anonymous 42789 Replies
    • December 11, 2007
    • 11:36 PM
    • 0
    Flag this Response
  • Try taking olive leaf extract pills found at a health store. You need to find some with a good % of oleuropein; like 18%. I also have been rung though the ringer with doctors and they only could come up with guesses to what was wrong with me. I started taking two pills in the morning and two at night. It runs about $18 a mouth for the olive leaf, but its the only thing that makes me feel normal again. If I go off it for more than a week the symptoms start coming back. I'm guessing I will have to take this the rest of my life. Its better than feeling like crap though.you probably have a mycoplasma infection. One of my friends did Olive leaf, and I did Oregano Oil and yes, we saw instant changes.Have you tried TCM and NAET? It has helped me and several of my friends.We went from crippled to fabulous.best.
    Eatafruit78 960 Replies
    • December 13, 2007
    • 05:05 AM
    • 0
    Flag this Response
  • what is TCM and NAET?
    Anonymous 42789 Replies
    • December 13, 2007
    • 08:45 PM
    • 0
    Flag this Response
  • You may want to Google Traditional Chinese Medicine (TCM) and Nambudripad Allergy Elimination Technique - naet.com.Ignore Chirobase.org because that page allows no feedback and it has not been updated in years...it is almost like an political attack ad.TCM and NAET are a start. Keep an open mind.BestFruity.
    Eatafruit78 960 Replies
    • December 14, 2007
    • 00:06 PM
    • 0
    Flag this Response
  • Hello, I was interested to read your situation, I was diagnosed with CFS in 1995 after a bout of meningitis, subsquently I struggled for 3-4 yrs before being able to return to full time employment and play some sport. I was leading a normal life at 95% functioning before unnfortunately in Oct 06 after a short viral illness my balance went weird again, and the intense fatigue returned, aswell as headaches, involuntary jerks, strange explosions in the head ( like your having a split second stroke or seizure all this included extreme anxiety I then spent 5 days in hosp, where the neuroligist diagnosed atypical form of migraine. I thought he was joking !!! Anyway over the 07 i had 3 hospital admission, culminating with Pneumonia, and a pleural effusion ( not infective, but inflammatory ) during these stays in hospital I was give Morphine & Valium which cause idiosyncratic drug reactions, after 24 post dose my head seems to go into turmoil, almost like having a lowered seizure threshold.( The drs thought I was making up stories ) Ironically I decided to see one last CFS expert, and he has tested everything, and guess what elevated thryoid antibodies, yet Euthyroid it has been postulated that I have H.E - my SPECT scan is abnormal under cognitive challenge with cerebral hypoperfusion in some regions.Anyway thanks for posting your e-mail on your predictment, I was a great help. Best Wishes Ganno from Auss.
    Anonymous 42789 Replies Flag this Response
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  • 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. Hi Elke, Approximately 100% of your symptoms are b12 deficiency symptoms or co-correlates, including thyroid disorders. http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=238 Come on over and check out the complete list of symptoms, unless you are cured and without any of these symptoms any more.
    Freddd 3576 Replies Flag this Response
  • Hi there, I also used to suffer from Chronic Fatigue - but not to the extent you have. I read about some fascinating research done in L.A. many many years ago. It was theorized that food could be culprit so, in 1946, a medical team from NORTH HOLLYWOOD PRESBYTERIAN HOSPITAL, who had the use of a POLARAGRAPH MACHINE designed by a Check Dr. Hirovoski, decided to investigate this theory. This machine measured the daily hormonal output via urine samples and over the next 12 years 1400 patients were tested. They all had one thing in common: Low nutrition in the cells as well as low hormonal output. ACTION: Diets were changed to give the correct amount of nutrition. RESULT: Still chronic fatigued. NEXT STEP: Feed control group concentrated cold pressed oils of Wheat, Rice and Soya (with the allergens removed). RESULT 1: Hormonal Levels rose in ALL patients. RESULT 2: All regained their vibrant, healthy energetic levels!! No exceptions! Just a thought for you. Hope it is of some use.Keith
    keithbosenberg 1 Replies Flag this Response
  • There is Chronic Fatigue and CFIDS which I was told I have. Which a lot of the Gulf War Vets have. Although I was never there. I am a VET and was over seas and treated some casualties from Mogadishu. Also there was mycoplasma ferriten put in some of the vacines by "accident":rolleyes:. I still need to get myself tested for that. CFIDS....is Chronic Fatigue Immune Dificiency Syndrome. I was also misdiagnosed with Fibromyalgia in 96 while on Active duty. Although Fibromyalgia simply means muscle pain. It is not a diagnosis withen itself. Fibroymalgia is comming from something else. Wich mine was. I was not excepting that diagnosis. I think a lot of Dr.'s use that as a "catch all" diagnosis when they do not KNOW what else is wrong with a person. As with my case. They just give up! Pass you on to the next doc. and so on. So, some 15yrs later (this July), I found out I had Chronic Lyme Disease. If you have multi systemic issues. I would seriously reconsider researching or looking into another underlying cause. Just my 2cents.
    zephyr 10 Replies Flag this Response
  • Ummmm...is it just me or are most posters completely ignoring the fact that the original poster was MISDIAGNOSED with CFS? The point of his story is that he really had Hashimoto's Encephalitis. He is probably by now a doctor. Are you still watching this site? Thank you for posting your story. I am in the process of fighting my way through a bunch of doctors who want to put me on Prozac b/c they are too lazy to figure out what is really wrong with me. Similar symptoms- also not remotely depressed. Looks like I really need to consult an Endocrinologist to rule this out too.Thanks again. Hope you're feeling better.
    dizzy lizzie 192 Replies Flag this Response
  • After months of scary symptoms, an internist mentioned HE as a possible cause....Ive been sent to numerous specialists, including a psychiatrist. The cognitive decline is frightening. I felt like I was out of my body for months. The symptoms (after a year) seem to have calmed (which also points to HE, as it comes and goes), but no confirmed diagnosis as yet. Best of luck !
    Anonymous 1 Replies
    • September 20, 2014
    • 02:19 PM
    • 0
    Flag this Response
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