Discussions By Condition: I cannot get a diagnosis.

shaking attack with drooling

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: taniaaust1
  • February 4, 2008
  • 07:13 AM

I have CFS and get over 60 (umm 82??) different symptoms with it.

Yesterday I got a new symptom with a body esp head, very visable shaking episode I had (this shaking is common in CFS). The thing was on this occassion, I uncontrollably drooled everywhere with it :confused: . Ive never drooled before with that symptom!!

So hence are trying to work out now if this new symptom is just yet another normal CFS one, which comes with my illness or not or does this sound like I had some kind of fit???

As my friend who witnessed this shaking attack (and went and grabbed me and held me cause of it cause i almost collapsed..scaring him), has a severely epileptic daughter and he said he had thought i'd been about to have a seizure. He said that I looked to be between having a grand mal seizure and being normal.

So I went and researched epilepsy to see if drooling happens then and thou i didnt find out my answer, I came across that after seizures.. headaches are common. Anyway I DID get a bad headache, immediately after this shaking and drooling incident.

I do go unconscious at times to my knowledge (that has happened 3 times in past 6 mths.. one time the friend who witnessed this said i was out cold for 3-5 mins). I put this down to the POTS I have and my heat sensitivity (as on one of these occassions, I went unconsicous cause I cant stand the heat). My CFS specialist thou suspects it may be my heart (due to heart problems being rampid in my family).

Anyway.. drooling with shaking incident??? anyone?? any ideas??

(on research at this site, I can see that those with POTS can have also Dysautonomia which can cause drooling.. so maybe it's just that thou i cant see head shaking listed with Dysautonomia.. thou being a CNS problem. maybe one would also shake???)

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  • Hmmm... I wonder if you might have what I have. I don't know, but will share this information and you can do with it what you like:For years, I was told I might have chronic fatigue syndrome. But my neuro symptoms seemed a little too extreme to me (my reflexes were brisk), so I went to a variety of neurologists and eventually got diagnosed with something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis- which I did not know I had, because my TSH and other thyroid hormones- checked multiple times- were always normal. In fact, I was reassured over and over that my thyroid gland was "okay".This is common for a lot of HE patients. Many of us are "euthyroid".Because it was suggested several times that I had CFS throughout the years, I am left permanently wondering if perhaps some cases of CFS might actually be what I have. There are a lot of overlapping symptoms: I had swollen lymph nodes (in my neck- I think they were draining my thyroid!); I felt chronically fatigued- the wheelchair type experienced by CFS'ers; I had frequent headaches, often seen in CFS; I had brain fog, often seen in CFS'ers; I had balance problems, often seen in CFS. The list of overlapping symptoms is quite long- too long to list all of them here.The reason I bring this up is because you also have been diagnosed with CFS but now have what I think sounds like a seizure.Hashimoto's Encephalopathy is known to cause seizures. At least half of HE patients get them. I had some myoclonic jerks for a while (which are also seen), but never seizures. But every case of HE looks different...Some people with HE are quite ill and can develop psychosis and/or slip into comas. Every case is different and you can have some or many of the symptoms. The most common symptom according to one study, however, is "central fatigue"- the profound fatigue seen in MS and CFS. This study stated it was seen in 100% of the 18 HE cases they looked at. Another common thing seen is diffuse slowing on EEG and brain hypoperfusion.I don't know if you want to look into this at all, but because it took me 8 long years to reach a diagnosis, I thought I'd put it out here. I know other people have gone much longer undiagnosed than I did, but it really hurt, given all the doctors who did not take my symptoms very seriously.HE, also known as SREAT (steroid responsive encephaloapthy associated with autoimmune thyroiditis) is very responsive to steroids- even just a single pulse and taper in many cases.HE is diagnosed by checking thyroid ANTIBODIES, even if the hormones are normal. This is not done typically, as doctors are trained to check antibodies only if the hormones are off first.I was pretty shocked to learn I had HE and by default, Hashimoto's Autoimmune Thyroiditis. For 8 years my doctors kept telling me my thyroid gland was healthy. Then I had an ultrasound on it which showed it was full of tiny nodules from the autoimmune destruction. I was pretty sad, because I know that those nodules did not just get there overnight, and were there when I was being told my thyroid was A-okay.Most doctors have never heard of HE/SREAT. It took me 8 neurologists, and it was a movement disorder subspecialist who finally figured it out. So, chances are, this has never even occurred to any doctor you have been to (unless you've been to a creative endocrinologist).Again, I have no idea if this applies to you, but I thought I'd put it out there.I am so sorry you have CFS and now the scary recent episode. I hope you get an explanation soon, be it HE or something else. It might be a good idea to be followed by a neurologist, as there are a lot of things that can cause seizures, and they can help determine if what you had was one or not. Best Wishes.
    Anonymous 42,789 Replies
    • February 4, 2008
    • 10:36 AM
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  • I just saw your response to the person with the DVTs and PE and you mentioned the MTHFR polymorphism that you have. I don't know if that changes any of the stuff I wrote above or not (it's too late to edit it). If you see a neurologist, you might want to mention all the previous testing you had done (sorry I didn't know about it)...I did a little Pub Med search for MTHFR polymorphism. There's well over a thousand articles listed and so I was not able to look over all the listings, but there was one that sort of stood out as possibly relevant:It's the listing for the journal, Seizure 2007 Sep 26 and the article is titled "A High Frequency of the MHTFR 677CT Polymorphism in Scottish Women with Epilepsy". Not that you have epilepsy or anything (or are Scottish), but it might provide some kind of useful info.
    Anonymous 42,789 Replies
    • February 4, 2008
    • 00:46 PM
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  • Im in the subgroup of CFS that is often called ME, (thou now they want to go calling the two different things the same thing! but many specialists separate these two things). ME patients often do have a lot of obvious neuro issues. "But my neuro symptoms seemed a little too extreme to me (my reflexes were brisk), " ummm interesting. One of my symptoms (also an ME one thou), is hyper reflexia. I almost kicked doctor in head when he tested my knee reflex one day it was sooo over reactive. "I had some myoclonic jerks for a while (which are also seen), " Ive had severe jerks at times of CFS crashes Thanks.. You've certainly given me something to think about. I think I'd better make sure Hashimoto's Encephalopathy is ruled out in my case. I'll going to go throu all my previous test results to see if that has been ruled out in any way.
    taniaaust1 2,267 Replies
    • February 5, 2008
    • 10:39 AM
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  • elke.. ive just been throu my medical file to look to see if i'd had the test you said already done "HE is diagnosed by checking thyroid ANTIBODIES, even if the hormones are normal. This is not done typically, as doctors are trained to check antibodies only if the hormones are off first." Ive had my thyriod hormones checked a couple of times (my thyriod hormones were normal).. and my specialist has checked my thyroid autoantibodies too. My test results there say "Thyroid Peroxidase (TPO) Antibodies 5 IU/mL ( A TPO result less than 50 IU/ML virtually excludes the possibility of active Hashimoto's disease" Sounds like your doctors werent all that though with their tests and they also didnt try to gain any supportive evidence to match their CFS diagnoses. Ive had soooo many different tests Ive been put throu to rule out stuff. Ive also had tests done which have helped also to confirm that CFS is the right diagnoses (rather than only just ruling things out). Some abnormal results are common in CFS/MEeg my EEG brain topography shows beta frequencies when my eyes are closed and elevated EEG in beta .. (this is abnormal without a cause, in general population but a common find in CFS so something to look for). Thanks anyway.. it is good to make sure nothing has been missed. Good to hear too that my doctors havent missed checking things.
    taniaaust1 2,267 Replies
    • February 5, 2008
    • 10:59 AM
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  • What meds are you currently taking?DOM
    acuann 3,080 Replies
    • February 5, 2008
    • 00:02 PM
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  • blaze.. im in Australia. Not ALL CFS cases are lyme!! If you still believe they are.. how would you explain how CFS is just as common in Australia as elsewhere, but we dont have the same incidence of Borrelia as elsewhere? If ALL CFS is caused by lyme..shouldnt we then too have those bacteria common here? following is info from some big studies on Borrelia done in Australia. You will see that non of our tick borne organisms have been shown over here to affect humans and no lyme organisms have been ever isolated from a local Aussie (who hasnt been overseas). So how on earth could all CFS by caused by Lyme??"Lyme disease (LD) is a tick-borne zoonosis caused by the spirochaete bacterium, Borrelia burgdorferi. Since the disease was first recognised in 1975 it has become the most frequently reported human tick-borne infection worldwide. It has been reported from every continent (except Antarctica) although doubt remains as to whether it occurs in the southern hemisphere in general, and in Australia in particular. " "The only species of ticks shown to be competent vectors of B.burgdorferi to humans belong to the Ixodes persulcatus complex, including I. scapularis and I. pacificus in the United States, I. ricinus in western Europe, and I. persulcatus in eastern Europe and Asia. No species of this complex exist in Australia. " "Conclusions - AustraliaThere are some major differences between Australia and the endemic areas of the northern hemisphere with respect to the natural history of LD: No ticks of the I. persulcatus complex, the principal vectors to humans in the northern hemisphere, occur in Australia. In eastern Australia, the logical candidate vector would be I. holocyclus which has a wide host range and is the most common tick biting humans. It was unable to transmit a North American strain of B.burgdorferi but an association with a so far undiscovered Australian spirochaete can not be excluded. None of the mammal species identified as reservoir hosts in the northern hemisphere are present in Australia. There are reports of spirochaetes in Australian native animals, and a local mammal could be a reservoir host for an indigenous spirochaete that occasionally infects humans through a tick vector and produces a clinical syndrome similar to LD; however, no spirochaete was detected in the 12,000 ticks or animals processed. SummaryThe diagnosis of LD outside known endemic areas cannot be based solely on serological tests especially if they fail to conform with internationally accepted criteria, because of the high incidence of false positive results. A clinical diagnosis in a non-endemic disease area (especially of Stage II or III disease), is difficult to support without isolation of the causative agent from the patient, from other patients with similar illness or from a known vector in the region. The existence of LD in Australia will remain controversial until an organism is isolated from a local patient and fully characterised, or until a tick-borne organism can be shown to be responsible for the human infection. If it exists it shares few of the epidemiological or clinical characteristics of US or European patterns of LD. "Further ReadingBaldock, F.C., Yamane, I., and Gardner, I. (1993). Pilot survey for Lyme disease antibodies in Brisbane dogs. Australian Veterinary Journal, 70:356-7.Barbour, A.G. and Fish, D. (1993). The biological and social phenomenon of Lyme disease. Science, 260: 1610-1616.Dickeson, D. and Gilbert, G.L. (1994). Lyme Disease in Australia? Western immunoblots not the final answer. Annual Scientific Meeting Australian Society of Microbiology, A125.DOGGETT, S.L., RUSSELL, R.C., Munro, R., Dickeson, D., Ellis, J. Avery, D., Hunt, C.L., Simmonds, J. and Trivett, N. (1994). Lyme disease - the search for the causative agent in southeastern Australia. Arbovirus Research in Australia. Arbovirus Research in Australia, 6:313-315.Hudson, B.J., Barry, R.D., Shafren, D.R., Wills, M.C., Caves, S.F. and Lennox, V.A. (1994). Does Lyme borreliosis exist in Australia? Journal of Spirochaetal and Tick-Borne Disease; 1: 46-51.Piesman, J. and Stone B.F. (1991). Vector competence of the Australian paralysis tick, Ixodes holocyclus, for the Lyme disease spirochaete Borrelia burgdorferi. International Journal Parasitology, 21: 109-11.RUSSELL, R.C., DOGGETT, S.L., Munro, R., Ellis, J., Avery, D., Hunt, C., and Dickeson, D. (1994). Lyme disease: A search for a causative agent in ticks in southeastern Australia. Epidemiology and Infection, 112: 375-384.RUSSELL, R.C. (1995). ?Lyme disease in Australia - still to be proven! Emerging Infectious Diseases, 1: 29-31.Wills, M.C. and Barry, R.D. (1991). Detecting the cause of Lyme disease in Australia . Medical Journal of Australia, 155: 275. Stephen L. Doggett, Richard C. Russell, Richard Lawrence and David DickesonOriginally appeared in: Inoculum, 4: 1-4. Modified and updated; November, 1997............... oh and blaze.. i have been checked for various bacterias known to be in Australia eg the various rickettsia groups etc
    taniaaust1 2,267 Replies
    • February 5, 2008
    • 00:18 PM
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  • What meds are you currently taking?DOM currently take the following meds for the various conditions i havePanadol (for pain)folic acidmethyl cobalmintrimethyl glycinepyridoxal 5 phosphateproboticsfibre supplementscalicumfish oilGinseng (sometimes)GlucosamineVit C (whenever needed)Magnesium (organic form as Im intollerant to normal ones one buys)Mitolift (a supplement which has has B vitamins, alpha lipoic acid, ubiquinone, acetyl-l-carnitine).. that's to provide some neuro protection, protect krebs cycle enzymes and energy transfers.olive leaf extract (whenever needed) Im meant to take Whey for the glutathione... but are completely intollerant to it. Ive given up taking D3.. (as it didnt raise my levels).. so im still very low in that I would probably be on pharmacuticals.. but Im fairly drug intollerant due to MCS so doctors are reluctant to put me onto drugs due to my drug reactions. I do take eryth (umm i forgotten the full name, its a strong antibiotic) at times.. 2 courses in past 3 mths, (with the olive leaf and nilstat an anti fungal med so i dont get thrush due to antibiotic), for what doctor thinks is Staph? infection. Im still carrying staph? in my leg but its only currently flaring up whenever I get a virus, so only whenever my system is more down. I wont bother about it for now as I hate taking antibiotics and only do when really needed.
    taniaaust1 2,267 Replies
    • February 5, 2008
    • 00:31 PM
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  • i went to the doctors today (as i had to go anyway to pick up some test results, which I then found had been stuffed up, as nurse had got me to put the samples in wrong bottles! So i need to do them all over again), and while there told him about the drooling incident i had. He seemed uninterested about it and wanted me to go back to one of the CFS specialists Ive seen before anyway, so I guess I will go there. Doctor today treated me like the uncontrollable drooling is me overreacting. Doctor told me I shouldnt think about my symptoms so much. (If my friend who had got scared witnessing my "crash" the other day, had gone with me.. I think he would of almost killed the doctor for saying that!) So i wish I didnt even bother telling doctor about it (no wonder I rarely bother about them). I just cant get a good doctor in my town, thou my specialists are good but they are far away.
    taniaaust1 2,267 Replies
    • February 5, 2008
    • 00:46 PM
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  • Hi TaniaDrooling can occur during a seizure so it might be worth having another eeg to see if it shows any epileptiform spikes.What tests did you have that diagnosed you with cfs?You typed a reply previously to my post "anyone pulsating please help urgently"-I was wondering if you would be able to send an email to marykorunic@yahoo.com.au so i could ask you a few questions about it please.Thankyou
    Anonymous 42,789 Replies
    • February 5, 2008
    • 02:14 PM
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  • Hi TaniaDrooling can occur during a seizure so it might be worth having another eeg to see if it shows any epileptiform spikes. What tests did you have that diagnosed you with cfs? You typed a reply previously to my post "anyone pulsating please help urgently"-I was wondering if you would be able to send an email to marykorunic@yahoo.com.au so i could ask you a few questions about it please. Thankyou Doctors used the stricter canadian CFS diagnostic criteria to diagnose, I meet the diagnotisic critera fully (and had many more of the symptoms on that than needed to make a diagnoses). (American diagnosic criteria isnt so strict so some with other illnesses end up more often getting diagnosed with CFS) I also have a very classical CFS history backing things up eg had severe glandular fever etc For some of the tests which often show up common abnormalities in CFS/ME people thou not all CFSers have all these things, the ones Ive had are as follows: - The two MRI brain scans Ive had, dont show up the lesions often common in CFS/ME patients - my SPECT scan appeared normal (often they show significiantly lower blood flow in certain parts of brain of CFS patients). - Two lots of 24 hr Holter monitoring, didnt show up the typical pattern of ME patients eg the repetitive oscvillating T-wave inversion and T-wave flats - CD4-CD8 Ratios (mine was normal), NK cell levels and function (normal) - Exercise stress test (normal that day thou i wouldnt even have been able to do it had I had that test on a bad day).......... The tests which supported the CFS diagnoses were as follows - hypercoagulability .. (75% of CFSers are shown to have a hereditary deficiency for thrombophila or hypo fibrinolysis. Cause I have MTHFR polymorphism I have that issue) - as I said my EEG scan showed an abnormality that is often very common in CFS people - I have chronic orthostatic intolerance (POTS) - I test positive with Romberg tests. (2 neuro specialists and a doctor has done that test with me. Neuro specialists said they'd never seen anyone hit the floor so fast, as I fell the instant I shut my eyes, shocking myself and they missed grabbing me. Just couldnt keep any balance at all with eyes shut) - my liver function test hasnt always been good (common abnormality in CFSers) - I also have Fibromyalgia tender points (that is an overlapping disorder with CFS) ............ of cause ive had a ton of other tests done too.. but i was only talking about the ones which look for things which are commonly found in CFS people.............. I'll look for the other post you mentioned and respond back to you probably tomorrow.
    taniaaust1 2,267 Replies
    • February 6, 2008
    • 00:14 PM
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  • I'm sorry your doctor blew off the drooling the other day. It's frustrating to get blown off by doctors, especially when you have to scrape together the energy to go see them in the first place...I don't want to push the HE thing, because you probably don't have it, but if you still wanted to look into it, you could ask them to check your thyroglobulin antibodies as well... Err maybe you already had those done and didn't mention them. Though TPO antibodies are more specific for HE and HT, some people only have the TG antibodies. And about 5-10% of people have no antibodies and the disease is only picked up on biopsy, though I wouldn't necessarily recommend that.Also, I was reading a book I have on thyroid the other day and it mentioned a study they did on CFS patients. A large portion of them had slow TRH responses. That is when TRH is injected, their TSH levels don't spike quite as high as they should. They don't have frank secondary hypothyroidism, it's just that they are a little sluggish. The study did not give great references, however, so it should be taken with a grain of salt. This is a separate issue from the HE.Just thought I'd throw these things out there... But I think what really needs to happen is more organized/aggresive studies of CFS and fibro patients. We need to know what the underlying cause of the disease is. I feel like my government here in the states does not take CFS as seriously as they do in Europe and other countries.I am sorry you don't feel wellBest Wishes
    Anonymous 42,789 Replies
    • February 7, 2008
    • 10:19 AM
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  • , you could ask them to check your thyroglobulin antibodies as well... Err maybe you already had those done and didn't mention them. Though TPO antibodies are more specific for HE and HT, some people only have the TG antibodies. And about 5-10% of people have no antibodies and the disease is only picked up on biopsy, though I wouldn't necessarily recommend that. Also, I was reading a book I have on thyroid the other day and it mentioned a study they did on CFS patients. A large portion of them had slow TRH responses. That is when TRH is injected, their TSH levels don't spike quite as high as they should. They don't have frank secondary hypothyroidism, it's just that they are a little sluggish. The study did not give great references, however, so it should be taken with a grain of salt. This is a separate issue from the HE. Just thought I'd throw these things out there... But I think what really needs to happen is more organized/aggresive studies of CFS and fibro patients. We need to know what the underlying cause of the disease is. I feel like my government here in the states does not take CFS as seriously as they do in Europe and other countries. I am sorry you don't feel wellBest Wishes Actually i havent had the TG antibodies antibodies test done.. Im very sure I have CFS thou. I'd like to discuss CFS and HE more, to learn the distinguishing differences between the illness.. and see where your doctors had gone wrong in misdiagnosing you with CFS instead of the HE. Were you missing essential CFS key features that they should of picked up on. Were their features of HE which aint normal CFS symptoms? Were there clues other than the scienctific tests later on done, which should of helped them come to the correct diagnoses? I think only had the general, basic TSH tests done which show nothing abnormal. Thou in CFS, the more complex T3 T4 test is recommended. I dont think my free health system over here pays for that thou, thou i think one doctor suggested me to save up so i can have that test. Often CFS people can be a little hypothyriod (more on a subclinical level or borderline level. I do thou have hypothyriodism running in my family with two family members on medication for it (umm i've actually never mentioned my family history with that too doctor, as I didnt know about that until recently). There are some great CFS studies currently in process, (i dont think much of the big american one currently going on thou). Over here in Australia, there are many doctors and researchers who have a big interest in CFS and have been doing studies. Ive been involved in two CFS studies in only the past year, one was being done by researchers and specialists at our main cities hospital. Part of the reason why Ive had so many different tests, that aint usually easily available to patients, is cause of being in various CFS studies.
    taniaaust1 2,267 Replies
    • February 8, 2008
    • 00:58 AM
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  • elke..With Hashimoto's Disease.. is the symptoms triggered by exertion? Does it occur post exertionally?? Maybe that is a distinguishing difference between CFS and HE etc?? When CFS patients do things, exert themselves in any way, mentally or physically, we end up iller. Our illness is dependant some on what we are doing and there is a direct correlation to our activities and how sick we are. Does Hashimoto's make one "crash" "flare" due to activity. We may have better times if we do less or avoid our "triggers" as our symptoms can not be as bad. Does doing less make an Hashimotos's Disease better some? Pacing activities helps CFSers ..does Pacing help Hashimoto's? Im not sick all the time.. just whenever I try to do things and exert myself in anyway or expose myself to my CFS triggering things. Thanks for the discussion. ...... oh i forgot to say that the CFS specialist my doctor wants me to see is an endocrine specialist. So im going to make sure I tell him about my family history of hypothyriodism while there. (Ive only seen that specialist before to take part in the CFS study he was doing..so hence havent had a normal consult with him before).
    taniaaust1 2,267 Replies
    • February 8, 2008
    • 01:31 AM
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  • In answer to your question, yes, exerting myself made me flare up worse. Any kind of stressor- even emotional ones, would cause my illness to flare. I think that's because it's an autoimmune disease. It's weird, but I used to get this aching in my neck when stressed out. I now think that this is my thyroid illness flaring up. Of course, there's no proof...As for my exact signs and symptoms, here they are:-profound fatigue that seemed to wax and wane but I NEVER would feel anything greater than maybe 75% of my old normal (even now I'm still not 100%). At it's worst, I thought I needed a motorized wheelchair because I would not be able to push one myself- I never broke down and bought one, though and instead pushed myself to do a little activity each day-daily headaches since age 10, but not as severe as when the fatigue started, where they became excruciating migraines. These were headaches in my left eye but then also with a lot of neck tension, almost like meningeal irritation in retrospect. I had to move slowly or would get a profound headache. Very sensitive to light and sound and odors or low oxygen levels-balance problems that would come and go. Had a hard time sitting up for long periods of time, especially on chairs with wheels. positive rhomberg.-slurred speech, problems with word finding, grammar, memory issues that would come and go. Felt like someone put vodka in my coffee, but I'm not a drinker-per chart: brisk reflexes with crossed adductors; also babinsky sign with triple flexion- these are signs that the problem is in brain or spinal cord and not peripheral (although rombergs positive means it's peripheral)-white spots on MRI- no MS plaques, just "perivascular changes" perhaps from migraine, although in HE, autopsy shows inflammatory cells around the blood vessels (perivascular changes) in the brain. Mine were always on the left, same side as headaches-chronic sore throat- not sure if it's my thyroid inflamed or from GERDThen there's a lot of other symptoms that I am calling thyroid symptoms even though my TSH was okay:-dry skin-new onset GERD-constipation, leading to hemorrhoidselevated cholesterol and triglycerides yet I'm thin and do not eat much-poor appetite-hoarse voice off and on-compression neuropathies: one of my earliest signs was numbness and tingling in my hands and feet- especially wrists at night from bending them-puffy eyelids-skin problems- acne, ruddiness, thinning but looked coarse-then there's the fatigue, mental slowness, and headaches that overlap with HE/CFS-heavy periods, closer together-sinusitis like congestion in my nose and throat- was scoped and told things looked pretty boggy- this can happen with low thyroidAlso, swollen lymph nodes in neck-perhaps draining my thyroid..My ESR, CRP, ANA were all okay, but some people with HE have elevated ones.I don't know if any of this helps at all. I certainly do not want you to go through any futile or unnecessary testing or get your hopes up...HE falls under a category of disease known as "autoimmune encephalopathy". Perhaps if NO cases of CFS are found to be HE, then maybe at least some of them might still fall under this category of autoimmune encephalopathy. Who knows? Maybe there's another antibody out there (not thyroid) that we don't know to test for yet. Maybe an environmental toxin triggers it's production and it mimics something in the nervous system. There are all kinds of autoimmune disease that affect the brain (HE, celiac, lupus, sjogren's ,etc)The only difficulty with this argument is that so far, CFS is being called "immunodeficiency", so perhaps it's not autoimmune at all.What I am convinced of is that CFS is a bona fide neurological disease. So is fibromyalgia (which i never had). We just don't know the etiology yet.I hope they find out the answers soon. I hate to know that there are all those people out there without an explanation... and many doctors are arrogant and don't even think CFS and FM are real. I know what that feels like- I was told that my HE symptoms were not real either (my doctors fed me paxil as if they were tic tacs).Anyhoo, I hope this helps.I will keep you in my thoughts even though you're on the other side of the planet!
    Anonymous 42,789 Replies
    • February 8, 2008
    • 02:39 AM
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  • I forgot to mention, that of the few doctors who took me seriously, the differential diagnosis included: celiac, MS, spastic paraparesis, hereditary ataxia, sjogren's lupus, channelopathies, mitochondrial disease, neimann-pick type c, CFS, and of course HE. There's probably some I'm forgetting, but the take-home point is that while some (most) doctors thought my neuro exam was pretty normal and blew me off, the ones who did a careful exam knew I had a neurological illness and pursued one.
    Anonymous 42,789 Replies
    • February 8, 2008
    • 03:00 AM
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  • sorry to post in 3 segments, but I just remembered some other things I have that may have been listed on the CFS link you gave:mitral valve prolapse (mild) with trace regurgea patent foramen ovale (right to left shunt)also, I forgot to mention that I had occasional joint pain, which was random, vague, and fleeting and I think may be related to the hypothyroid symptomsand early on, when I first really started feeling wiped out, I had various fluctuations in my white count and differential. My overall white count was normal or too low- but the differential swung widely: for example, sometimes my lymphocytes would be too high or too low, other times it would be my monocytes or neutrophils. No real pattern- and no explanation was ever given.i really like the site you gave the link to - the one in phoenix. i had many, many of those symptoms!
    Anonymous 42,789 Replies
    • February 8, 2008
    • 06:34 AM
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  • oops, forgot a few more things:low blood pressure for many years (80's-90's/40's-50's)low temperaturecold intoleranceheart palpitations occasionallyhair thinning- lost half of my hair over several yearspoor coordination, inability to remember things that took multi-steps, such as learning guitar strings or dance steps; clumsinesswake/sleep cycle got flipped: somnolent during day & insomnia at nightposture never quite straight- people told me I wasn't standingup straight/leaning to one side, but I could not tellalso, had a head tilt that people would comment onbasically, I looked drunk and felt like crap. I forgot to mention that I used a cane for two years for balance. This improved after the steroids and now I only use one to go hikingok, I hope this is complete now and I won't need to post a fifth time to get everything. Apparently, I'm still having issues with memory.I hope this helps you in some way (??)
    Anonymous 42,789 Replies
    • February 8, 2008
    • 07:04 AM
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  • thanks elke for all those posts :) , im glad it was over several posts as that made it easier for me to read. It has helped give me a much greater idea of the similarities between the two conditions, THERE IS so much alike between CFS/ME and the HE. "also, had a head tilt that people would comment on" Ive always had a head tilt which has been commented on.. but i think it's due to how my neck is (ive been in quite a few car accidents etc and injured it at times). " brisk reflexes with crossed adductors; also babinsky sign with triple flexion- these are signs that the problem is in brain or spinal cord and not peripheral (although rombergs positive means it's peripheral)" Did i mention that ive had hyper-reflexia at times (i guess that would be the same as brisk reflexes? in some ways)......... and i've showed that babinsky sign on one occassion (thou the time neurologist tested me, it was fine)................................... I did that follow up the doctor wanted me to do with the CFS specialist today and FINALLY.. after almost a year, of trying to get them to listen!! they've realised I have a problem Ive been telling them I have but previously no one would test me for it (so frustrating as they wouldnt believe me as what I was describing sounded too weird for them).. so I ended up joining a CFS study hospitals were doing, knowing they were going to test for abnormalities in that area. My latest results show I have sympathetic nervous system dysfunction (this is common and a normal problem in CFS). The SNS is part of the Autonomic nervous system (ANS). My dysfunction in this area is the worst flutuation in BP, the specialist said he's ever seen in one of his CFS patients!!! Most CFS patients have low BP cause of the SNS dysfunction.. rather than crazy BP! He said my case has given him something new to think about. It was even OUTSIDE the parametres they had set for the CFS study as the degree of the dysfunction and how the dysfunction is presenting in my case, isnt something anyone was expecting to see, except if equipment faulted. But on looking at all my results today and how everything compares (and past results done elsewhere), it can be seen that it wasnt equipment fault at all. My BP was shown during the monitoring when Im being active, to be going up to 176/138!! (Active for me is just standing! or walking to another room). It isnt counted as me having what is medically termed as having high blood pressure as my blood pressure is also lowish at times.. eg drops to 80/51 Its highly unstable and all over the place.. hence showing it's an SNS dysfunction. ................... I looked up other illnesses which are commonly known to cause BP shifts such as mine..and could only find two rare conditions. Both of them being degenernative, fatal illnesses. (my BP problem dont seem to be degererative as it's stayed like this all over the place for some time..and actually I personally believe has improved some. It seems to be related to how much Im crashing. I used to always in the past have the low BP thou, like it is normally in CFS. I just think my body has taken another step. Maybe the other CFS people the doctor sees..have never had the severity of CFS which I have had..so maybe my SNS is damaged more??????).............. oh i forgot to say.. the specialist has told me today to get my doctor to refer me to the hospital to see a neurologist again.. due to that drooling incident. He thinks i may have a form of epilespy. (my doctor was orginally going to do that but i told him not to bother sending me for more neuro tests as im sick of tests which often dont show things). Anyway.. i'll allow him to send me to a neurologist again now.
    taniaaust1 2,267 Replies
    • February 18, 2008
    • 02:57 PM
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  • It sounds like they are finally taking the drooling episode seriously. That's good to hear. I am so sorry you are experiencing all of these symptoms. As fatigued and wiped out as you must be, it is a truly wonderful thing that you are participating in these studies. This is the only way that medical researchers will be able to finally figure out what is causing chronic fatigue syndrome. Same with fibromyalgia. I hope they get to the root causes soon. While these conditions almost seem epidemic, they still are regarded suspiciously by many doctors, especially here in the states. I have a really hard time with this attitude because it's highly unlikely that all of a sudden, thousands (if not millions) of women (and men) would be having the same exact symptoms.Hopefully your efforts, and efforts of other people suffering from CFS and FM will soon lead to identification of the underlying etiology.Your inner strength and courage to drag yourself to all these appointments despite feeling so ill deserves a round of applause! :)Best Wishes!
    Anonymous 42,789 Replies
    • February 18, 2008
    • 10:53 PM
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  • As fatigued and wiped out as you must be, Your inner strength and courage to drag yourself to all these appointments despite feeling so ill deserves a round of applause! :) There's a myth right there about CFS which i try hard to debunk. When I go to appointments, Im usually nowdays fine, Im going to appointments feeling fine.. CFS crashing often can come AFTER doing things, so i can be very ill AFTER appointments (eg the post exertional fatigue may kick in hrs later.. or even two days after). But i look and feel perfect when I go. This makes it often very hard for others to understand just how sick i really are and just how badly i can "crash". Thou i was constantly tired and EXHAUSTED during years of this illness, over time CFS symptoms can change esp if one has learnt to live well with the condition. By living well, i mean proper pacing techniques, one can control the illness to some degree.. hence i can AVOID crashes and making myself ill, probably about 90-95% of the time. To avoid a crash.. it may means a lot of planning comes into ones life.. eg if i have doctors appointment coming up. I know to just rest the couple of days before (basically that's just sitting about or laying, not doing housework or anything, it seems to build up the amount of energy, I will have to expend).. go to appointment and rest for a couple of days after it (to help prevent crash). This way, I WILL NOT get at all ill. By doing that I can have no symptoms come up at all. Those who are going around always tired with this illness.. I personally believe are not in control of their CFS and being able to work their lives about the illness (or they are in the middle of a crash.. at which point.. one cant realy do a thing about that except rest and hope to recover soon). CFS CAN be controlled some, it's thou a matter of working out ALL the triggering things and having very good pacing. Also some when they crash.. may not crash in a tiredness kind of way. For some the crash can come in just weakness (thou they may not feel tired, the legs may just not be supporting them or they may just loose control of their legs after they've used them) or others crash in a "sickness" kind of way.. dizziness and nausea.. but may not feel exhausted or tired as such. One ME expert.. actually talked about how the defination of CFS should be changed.. as there is much too much focus on the "tiredness" and exhaustion" symptom... when it can rather be sickness and weakness and for some in crashes so may not even be relevant at all for a subgroup with CFS. (One of the reasons why many with ME subgroup of CFS.. really hate the name CHRONIC FATIGUE syndrome .. as for some of us, it isnt like that at all, its more neuro issues.. body shakes etc after exertion). I find that even CFS specialists often hold a lot of myths (unless they personally know people with CFS well or are seeing large amounts of CFS people). eg the one i saw yesteday has had 300 CFS patients. He thou didnt realise that the SNS dysfunction which comes with CFS..can dysfunction like mine did. He didnt realise that a CFS person could possibly have high BP (when there is actually a subgroup of CFSers who present with like syndrome x .. so i had to try to educate him on that). He also told me that CFS people dont have fits... I know that to be untrue as I know many with severe CFS Do, over time Ive come to know many severe CFS people and Ive also seen study evidence on CFS and fits thou and 2% of CFSers get actual proper seizures from it. He also told me that my current "mental" issues (severe mood swings).. wouldnt be anything to do with CFS. Ive read at least one world known CFS expert say that CFS can retrigger past mental issues or new ones can happen due to it. All these mistakes by a CFS specialist within just half an hr appointment with him. It's kind of sad really but CFS is such a HUGE complex illness that even the specialists cant get their heads about it properly. ............................. I'd advise anyone who thinks they have CFS to get involved with active members of the CFS communities as they are often much more familiar with it all than doctors and they may have a better idea if you fit with this illness or not. (For with the doctors.. MOST of the stuff to do with CFS.. HASNT EVEN BEEN STUDIED AT ALL YET (maybe they've studied 5% of what they need to study with it!).. so the ones with the issue, may know much more still. Doctors have to get a lot of their knowledge from just observation of their CFS patients. Talk to a heap of us, get to know us and you will see the CFS patterns... there is wide variety of patterns and subgroups.. but there is also consistancy. We are so a like we can often recognise each other). My other CFS specialist has seen 600-700 CFS patients.. so he's a little better. A good CFS expert needs to see 1000's of us, to really be able to understand this illness and all the various ways it presents. http://www.youtube.com/watch?v=nb-mkFxRpGM Is a good video on CFS
    taniaaust1 2,267 Replies
    • February 19, 2008
    • 00:05 AM
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