Discussions By Condition: I cannot get a diagnosis.

constipation, low white blood count, white cell small

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • September 13, 2010
  • 10:34 PM

I have been sick for 1 1/2 years. I started with a painful bladder and ulcers(and the ceasing of my menses). Doctors checked for all the female reasons like a UTI. I had a colonoscopy Marc 27th 2009 and since then I have had painful bowels. I also had female pain that turned out to be precancerous ovaries and uterus. I had a complete hysterectomy in March of 2010. That helped some. My bowels started working after hysterectomy and bladder pain got better. In about the last month I have regressed with minor occuring bladder pain, nausea, severe fatigue, brain fog (can't remember a thing), a feeling of always having the flu, and my bowels have stopped working again without a laxative. When they do move the feeling of pain is back and causes nausea. Believe it or not, the doctors were checking a nodule on my lung and caught a glimpse of a hernia on my large intestines. Maybe this will explain the severe pain that feels like my bowels are bulging and skin is tearing. I have been to over 30 doctors since March of 2009 and they are just now finding a hernia on my large intestines??????? Could the hernia cause all the problems I have been experiencing? When I get up and walk around (expecially in the morning) I can be very shakey and my heart pounds when I am up and around. I have twitches and bubbles that rumble around in my body. Is this because I am going through menopause? Mornings are always worse and evening seem to be better if I am not exhausted. I went to a general practitioner and am being referred to my 3rd gastro guy. My digestive system is a mess along with the bladder pain and flu like symptoms. Any ideas where else to go or what to look for? We do live on a farm and am going to get our water retested. It took 4 gynos and a surgeon to catch my ovaries and uterus. I guess it may take a few more gastros to figure out the rest of the story. I also have two diverticuli. My tongue also gets ulcerated right before I have a painful bowel attack and may last a couple of days. My tongue also has a red skinny strip on the left outer 1/4-3/8 inch of my tongue. When I feel better the sore and strip go away. It is the weirdest thing I have ever experienced. If it wasn't happening to me I would say it was impossible. I feel like #@$% and want this over. I have lost almost two years of my life. Some days I feel like I am just trying to keep my head above water. I wonder if going into menopuase did all this or what was the cause. Sound familiar? I would love input.

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  • I think your issue is chronic fatigue immunity dysfunction syndrome. The main indication of this is your varied symptoms and the your flu like symptoms. http://wwcoco.com/cfids/bernesx.html Based on that im quite sure you may have CFIDS.. that has quite a few coexisting conditions which can often come along with it so just with knowing the coexisting conditions, it is easy to see what other problems are happening with it. eg Interstitial Cystitis (that is what is probably giving you the painful bladder). The shakiness and the heart pounding could be due to postural orthostatic tachycardia syndrome (POTS) http://www.dinet.org/ ( 60-90% of those with CFIDS have POTS) OR it could be due to coexisting hypoglycemia. Early symptoms of hypoglycemia may include:ConfusionDizzinessFeeling shakyHungerHeadachesIrritabilityPounding heart; racing pulsePale skinSweatingTremblingWeaknessAnxiety Mornings are always worse and evening seem to be better if I am not exhausted. One third of women who have CFIDS.. have coexisting low cortisol levels in the morning. This may make you feel worst in mornings. I havent heard of that tongue issue being in CFIDS.. but in CFIDS there is a HEAP of weird things which can happen in it.. so that tongue thing dont surprise me at all. As to what specialist you need. You need to find one who specialises in CFIDS/ME/CFS (of the immunological, fluish kind of symptom subgroup.. that would be the canadian consensus defination subgroup of CFS which is more severe then other subgroups) CFIDS/CFS has just been linked to a mouse virus (three confirmation studies since late last year) and the CDC is currently working to get some kind of standardized test out there. Those with CFS are now not allowed to donate blood due to that virus most of us are carrying. I forgot to say.. ones with this at the beginning of it often have a high white blood cell count but with time (chronic infection of a unpicked up virus).. the white blood cell count can go quite low. My own white blood cell count is low and out of the normal ranges due to it.
    taniaaust1 2267 Replies
    • September 14, 2010
    • 04:34 PM
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  • Seeing the following virus you probably have seeing you are highly likely to have CFIDS and what is probably causing your low blood count (chronic virus infection). i thought i'd provide some links to info on it http://www.sciencemag.org/cgi/content/abstract/1179052 (note on further testing... they found this mouse retrovirus in actually 95% of those with canadian defination CFS (the same kind of CFS as im fairly sure you have). http://www.prnewswire.com/news-releases/study-presence-of-murine-leukemia-virus-related-gene-sequences-found-in-cfs-patients-101316939.html (dont be confused by the change of virus name.. XMRV is made up of MLV and another mouse virus in combination.. almost basically the same thing). So keep an eye out of when the government make testing offical and there is treatment out for this. The only place currently to get tested for both the XMRV and the MLV is throu the WPI which is leading the research in this field (i think its covered by insurance?). Note.. that XMRV is causing aggressive prostate cancer in males.. and possibly may be causing other cancers too!!! It could well turn out to be the cause of your cancer. Another cancer it seems to be causing is non Hogkins lymphonoma (spelling??)) and this subgroup of CFIDS also gets a lot of brain tumors and thyriod cancer. Much more has to be scientifically learnt about this new virus and exactly what its doing. best luck in finding a specialist for all this. You need to find one who is aware and up with the very latest research.
    taniaaust1 2267 Replies
    • September 14, 2010
    • 04:52 PM
    • 0
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  • Seeing the following virus you probably have seeing you are highly likely to have CFIDS and what is probably causing your low blood count (chronic virus infection). i thought i'd provide some links to info on it http://www.sciencemag.org/cgi/content/abstract/1179052 (note on further testing... they found this mouse retrovirus in actually 95% of those with canadian defination CFS (the same kind of CFS as im fairly sure you have). http://www.prnewswire.com/news-releases/study-presence-of-murine-leukemia-virus-related-gene-sequences-found-in-cfs-patients-101316939.html (dont be confused by the change of virus name.. XMRV is made up of MLV and another mouse virus in combination.. almost basically the same thing). So keep an eye out of when the government make testing offical and there is treatment out for this. The only place currently to get tested for both the XMRV and the MLV is throu the WPI which is leading the research in this field (i think its covered by insurance?). Note.. that XMRV is causing aggressive prostate cancer in males.. and possibly may be causing other cancers too!!! It could well turn out to be the cause of your cancer. Another cancer it seems to be causing is non Hogkins lymphonoma (spelling??)) and this subgroup of CFIDS also gets a lot of brain tumors and thyriod cancer. Much more has to be scientifically learnt about this new virus and exactly what its doing. best luck in finding a specialist for all this. You need to find one who is aware and up with the very latest research. I think you may be on to something. I went to a gastro guy today that told me some people are just geared like I am. He told me I probably have irritable bowel. I may have irritable bowel, but why. I do believe a virus could cause all my symptoms and will be researching all I can find. If this goes on much loger I will start looking for specialist that deals with CFIDS. I know I am somewhat better, but I cannot function well at all. I have too much to do to be down. Thanks for the input. Any other artilces or websites are welcome.
    cozynana 39 Replies
    • September 23, 2010
    • 02:09 AM
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  • Did you find out anything else. I have many of the same symptoms including the red tongue at the end and flat bits at the back. The bladder thing is the worse . i have had 2 cystoscopies and all say it looks so healthy that it cant be interstitial cystitis. Was diagnosed with impaired glucose tolerance. I only weigh 52 kg and am quite young so all a bit odd.!!
    Anonymous 42789 Replies
    • November 13, 2010
    • 09:15 AM
    • 0
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