New Here and Feeling REALLY SICK

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Regular Member

Date Joined Jan 2006
Total Posts : 146
   Posted 6/18/2012 5:29 AM (GMT -6)   
Hello all,
I have not been on the Lupus board on this site before.  I was initially seen at the Lupus Clinic at St Thomas in London almost 10 years ago after roughly 6-7 years of symptoms.  Although I had most Lupus symptoms at the time (minus the butterfly rash) they did not diagnose me as I showed negative for the ANA. 
In the years since then I have been diagnosed with the following:
Ulcerative Colitis diagnosed September 2002 after 14 years of symptoms - emergency surgery in 2009 due to toxic megacolon and currently living with a failed J Pouch.
Antiphospholipid Syndrome - diagnosed in 2010/11 after 5 x episodes of DVTs and acute PEs.
Behcets Disease - diagnosed in approx 2007 because my ANA was still negative and this disease is similar to Lupus but diagnosis is based on symptoms.
Becasue my UC, J Pouch and APS has been so bad I ignored the Behcets and have gone unmedicated for this for many years.  My specalist team now believes I probably have had Lupus all along and not Behcets.
I currently feel absolutely dreadful.  Symptoms just over the last 9 months alone incude a range of rashes; similar to discoid (on shoulders and back with large patches of skin staining where rashes used to be), scaly red rashes (arms, eyelids, back of ears) fluid filled pustilles (under eyes, scalp, back) - no butterfly rash; my joints and especially my back are absolutely causing me agony (I wake up unable to move as it honestly feels as though I am paralysed from the neck down but can feel immense pain, my fiance needs to carry me to the toilet); I am having severe reactions to the sunlight, ulcers in mouth and nose, constant vomiting and nausea, bouts of constant low grade fevers, something is now up with my kidneys (waiting for test results on this), difficulty swallowing food on occasion, constant headaches, racing heart beat, very low blood pressure (however very recently it became high), itchiness over body, very anemic, high inflammatory markers, severe fatigue, night sweats, insomnia, ringing ears, dreadful diarhea and intestinal blockages (going 30 times per day plus - however this is due to my failed J Pouch) and the list go's on.
I do understand that some of the above may well be caused by my APS and UC (failed J Pouch).  I am very worried that if the current tests come back negative for the ANA they will once again say I dont have Lupus.  I have no idea what the bloodwork diagnostic criteria is now for Lupus but believe that some of those for APS (which I am definitely positive) are the same for Lupus (?).  In the last week or two this has all become unbearable (pain and symptoms) and I should add that I was recently on holiday in Dubai where it was scorching hot.
I am going full circle as am being seen at the Lupus Centre at G&ST this Friday.  I am currently also being seen at Guys & St Thomas for the APS and a brain tumour they discovered last year.  I'm in the process of getting all my surgical/GI stuff moved here from another hospital who are refusing any more surgeries because of the APS.  I do hope I get some answers on Friday as well as medication and pain relief.
I am sorry to unload on you all but noone really understands all this autoimmune crap. I'm sure that many of you reading this have similar stories whereby you have multiple autoimmune diseases, have waited years for a diagnosis or showed up negative for a blood test and then went untreated.
Thanks for reading my story  :-) smilewinkgrin :-)   Any thoughts etc would be really welcome.
Tamara xx

Post Edited (tamara.ker) : 6/18/2012 8:56:19 AM (GMT-6)

Regular Member

Date Joined Jun 2012
Total Posts : 66
   Posted 6/23/2012 3:06 PM (GMT -6)   
Hi, you aren't alone on wondering on what is going on with you. I used to sit and wonder why I got this and how. A few of my buds and my Mom have a theory but, we won't go into that. Just that lupus can be contracted several ways.
As for your issues, I'm no doctor but sounds like alot of your issues seem to be GI. Just using my goofy common sense, if something is not working correctly in the GI tract, other things follow suit. Kind of like that saying: If momma ain't happy, ain't nobody happy. I do hope you find a doctor that will sit with you and go over everything and sort things out.
Lupus and diagnosing the specific kind is very tricky. I think I am lucky now that I think about it, my rhuemie looked at my lab results and went over the criteria for lupus and yup, I more than qualified in being tagged as having SLE and RA. That's the only good thing about having my 2 illnesses. When he told me my "official" diagnosis, I wasn't surprised. I kind of already knew since he gave me paperwork to read and fill out that amounted to a small
I do know that doctors are hesitant in saying its lupus. A lot of docs do not understand why or how we have these symptoms. I talked to an intern who was already a doctor in the rhuematology field, he was expanding his knowledge in auto-immune disorders. He was honest about telling me that. He told me doctors do not want to tag people as having lupus because it is so hard to pin down the specific symptom or treat it because of the other symptoms presenting. And with us lupus people, there is also the psychological issues. We also have "mental" symptoms aka the brain fog, personality changes etc.. That is why some doctors are too quick to say it is all in our head. We are making things up-they simply do not understand themselves.
In saying this about doctors, some are really good and they are in high demand and it does take time to find them and get into see them. I hope you find one or several to help you get a handle on things and get on with your life with your fiance.
Good luck! and don't give up 
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