Discussions By Condition: I cannot get a diagnosis.

Is this CFS??

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: mairmicate
  • April 23, 2007
  • 01:23 AM

6 mths ago I started feeling exhausted beyond belief and had a sore back and neck. I went to GP b/c I was worried about a recurrence of BrCA which I had 11 years previously. I had a bone scan and that was clear (phew!) but GP noticed a few swollen lymph nodes in my neck, which I hadn't noticed myself. U/S & CT scan dx'd cervical lymphadenopathy. Sent to my usual breast specialist who then found a (L) supraclavicular mass and lump in left breast, which I hadn't noticed myself either. I had also lost about 6kg in 6 wks at this stage (Nov 06). As you can imagine I was scared out of my wits, thinking the BrCA had come back. More CT scans from neck to pelvis plus full blood tests and breast U/S - all clear (phew!). Then I was tested for viruses, again, all clear apart from knowing I'd had EBV and CMV at some stage in the past. Tested for TB - negative. By this stage I'm starting to get dizzy spells and had lost another 2kg. I would start to feel like I was fainting and would have to lie down for about 45 min until it passed. Oncologist said I probably had 'Post-Viral Syndrome'. Sent to Infectious Diseases specialist and tested for every infectious disease they could think of - again, all negative. I had passed out in the specialist's rooms and he admitted me to hospital immediately. I was in hosp for about a week and while there I kept having dizzy spells and rapid heartrate. HR would shoot up to 140bpm just walking to the bathroom (they had me hooked up to a monitor). Had an MRI to make sure that BrCA hadn't spread to my brain - again, clear MRI, apart from a 1cm pineal cyst, which I was told was no big deal. Got out of hospital, dizzy spells starts going, and as it was NYE and I was feeling a bit better, I had a night of drinking with my sister (too much champagne...) and next morning had pain in lymph nodes under my jaw. Went back to GP, he googled this weird symptom and discovered it is pretty much specific to Hodgkins Disease. As one of my sisters had HD years ago, I was worried this was what I had, as siblings of HD sufferers have a higher risk of getting it than general population. Tried to get a biopsy done by breast surgeon but she thought I was just overly anxious and refused to do it. Told me to come back in a couple of mths if lymph nodes were still enlarged. This was Jan 07. Couple of weeks later, I notice I have a numb toe on my left foot, 2nd toe, and just numb on the underside of it. Then I have the headache from ***l and next morning I wake up completely numb down the left side of my body - everywhere, even inside my mouth. Go to work, ppl at work take me to hosp A&E - CT scan done on brain - all okay. I'm still numb though, the whole day. Next day, most of the numbness has gone, but there's some numb spots left over, the left 2nd toe, left hand around the base of ring finger, back of my neck on left side. Few weeks later the left side of my face is numb, the brow and around the eye socket and temple. By this stage I am starting to think someone has a voodoo doll of me and is having great fun at my expense! The lymph nodes in my neck are still enlarged, the left tonsil is larger than the right, and then I find a hard, painless lump in the lymph nodes in my groin, on the right side. This lump has been there now for weeks and it's not going away. I have not had any viruses or infections anywhere recently. No STD's at all, ever. No skin lesions on leg, but do have itchy legs and feet. I tried again to get a biopsy done of my neck lymph nodes to rule out HD but ENT specialist said I'm fine. Last Monday I went to work and noticed this tight chest pain, like someone was squeezing my windpipe. This went on til Thursday and I went to the hosp A&E again, thinking it might be my heart, as it had been racing again. I was not feeling anxious at all at the time it started happening. More scans etc and still nothing. They said I was suffering anxiety and depression and told me to go see my shrink. I am frustrated at not getting any firm dx but it's not making me that anxious that I'm suffering panic attacks or anything. I just want to know what is wrong so I can start treating it! I'm still feeling tired all the time, my neck lymph nodes tingle and hurt when I drink, I can hardly be bothered doing anything any more and I've now given up completely on all doctors as they're just convinced I'm a nutcase! Maybe this is 'Post-Viral Syndrome' or Chronic Fatigue Syndrome, as it used to be called - does anyone have any clues? The numb spots are now starting to spread too, so that the 2nd toe on my right foot is now numb, as well as the brow, eye socket and temple on the right side of my face. What IS this bloody ailment and how on earth do I treat it? I'm all out of solutions. Hoping someone can help me here pls


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2 Replies:

  • it's called Myalgic Encephalomyelitis check out this site www.ahummingbirdsguide.com see how many sx you have see how many people on this site alone have similar sx it is caused from a virus than can be epidemic or sporadic....several members of my family and in laws have similar sx as well as a whole bunch on this site. good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Forget the doctors. Go to a traditional Chinese therapist, or to someone doing genuine reiki / applied pressure point therapy. It works. Australia should have some excellent therapists from Indonesia. We need to wake up not only to ME, but also to the fact that the whole body is a projection from several other energy bodies we have, like those Russian puppets that fit into each other. First these get ill (for "higher psychological" reasons) then it shows up in the body as we know it - where it is very real and can kill. There have always been many therapists who can work with our energy bodies, thereby curing the body we know. Officially pray to find one, then "meet God half way" (part of the game) by actively looking for some in your area. Ask at the Theosophical Society, a Buddhist temple, a Spiritualist church, health shops - they tend to know each other. Or Google it. So, at least also try people who know what they are doing.Did they leave titanium clips in you from any of those procedures? A friend of mine had pains, lumps, rashes etc, now 40 years younger since having the clips removed. Metals are some of the worst toxins, and there is seepage from all metals. It only takes very little to have effect. See Dr Hulda R. Clark's book "The Cure for All Diseases", it used to be downloadable from www.makulumutis.com/downloads/cure.zip - it has also been published in print. (The doctors hate it.) Just don't build her "zapper", it's electrically dangerous. Better ones are available, from www.makulumutis.com in ZA but certainly in AU as well.
    Curly Stooge 319 Replies Flag this Response
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