Lupus? Lyme Disease? Something else?
Posted , 8 users are following.
I’ve had symptoms for over a year but have been humiliated by doctors.. sent to mental health specialists numerous times for anxiety.. I even go back to GP and tell them the specialist I have absolutely nothing wrong and they send me back again!!! I’m the least anxious person ever! I’m 100% sure there’s something wrong with me.
My symptoms:
Began in October 2016 with what felt like a disgusting flu, housebound for 2 weeks but never recovered. This turned into severe fatigue in which I was made even more housebound was so so frustrated at being too tired to do anything. Joint pains began, as well as carpal tunnel. (I get these very very severely now) Symptoms subsided in January until March when I started getting seizures, this was non stop all day for several days triggered by stress. Went to doctors for seizures and they suspected a vitamin deficiency but they did no tests because severe symptoms stopped.. Yet I still get up to whole body twitching more or less every day now. Had mad symptoms every day from March until June where they stopped for the summer. Symptoms then started again early September and are still occurring now (December)
Other symptoms I can remember are: Severeee headache, constant tingling in hands and feet, awful intolerance to cold where I’d be shivering for hours after drinking a cold drink etc. Weird blood symptoms in which huge bruises come out of nowhere as in MASSIVE or lots of little ones. Sometimes huge and sometimes small bleeding I can see under my skin. Also, bleeding in stool (sorry TMI) bleeding gums. Also I get really bad hangovers in where I have blood in my vomit, also when I drink. Blood tests came back positive for low antibodies, low platelet count and ANA. But a retest for ANA came back as normal but this was when I had no symptoms whatsoever. Because of the humiliation with the mental health specialists I refrained from going GP despite how much it took over my life. Only went A&E once for really bad chest pains I had, I even didn’t go when I was crying because of severe pain in kidneys and down my legs where it felt like my kidneys were failing on me!! I actually got kicked out of my last college for my symptoms and doctors still don’t take me seriously!!!!!!
0 likes, 9 replies
margaret22116 dscarlett
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dscarlett margaret22116
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margaret22116 dscarlett
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Not a neuro. They can't diagnose these types of issues and you'll be back to square one. You may have neuro type issues but it is not a neurological disorder as such. Rhematologist or immunologist. What area of the uk?
margaret22116 dscarlett
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lisalisatheone margaret22116
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lilian05079 dscarlett
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You are presenting with symptoms that are likened to Vasculitis.....look it up and see if your symptoms correlate...best wishes...
StephanieBrooke dscarlett
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As has been mentioned, demand you see a specialist. It took over 2 years to diagnose my SLE which is quite quick compared to others. I had all the symptoms but a lot of my bloods came back negative time and time again. The only thing raised was my ESR (inflammation) and occasionally my CRP. I did eventually get a positive ANA and a positive anti dsDNA along with abnormal platelets etc, etc. No one wants to be diagnosed with an auto immune disease, but getting answers to your symptoms at least helps you get the right treatment to manage them. Please don't be disheartened by your treatment from your GP so far. Keep pushing until you get some answers. If necessary, change your GP. You know your body, and you know something is going wrong. It may be a long road, and you could very well get negative blood tests as some do, but you must keep going. Be that pushy patient if necessary and don't take no for an answer. Good luck!
trippball dscarlett
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Hi dscarlett, I guarantee that you have more than one issue/disease going on. I've been sick for about 15 years. No doctor could figure out exactly what was wrong with me. I think you have SLE lupus and something else. I wound up diagnosing myself after 5 years of doctors not being able to do so here in the USA. I told them I have SLE lupus. Finally after testing me appropriately, they agreed. I have SLE, RA, Sjogrens Syndrome, Small fiber neuropathy, COPD, Fibromyalgia, Scoliosis, Degenerative disc disease, Carpel tunnel, and arthritis in lower back, NONE of which was diagnosed until I made them test me for Lupus. You have to be your own advocate it seems. I would go to a Rhumatologist and demand testing for SLE at the minimum! Once they have those results hopefully they can pinpoint everything that is going on with you as they did me. I was basically bedridden for years, suffering with so much pain, (many other symptoms as well but it's the severe pain that I couldn't live with anymore) then I was put on Plaquinil, that medication literary saved my life. I was already taking plenty of Morphine but still suffering, the Plaquinil took away so much pain that I actually can have a life now. It takes up to 3 months to work, but is so worth it when it finally does. Please go see a Rheumatologist and demand these tests, I wish you the best of luck and please let us know what you find out!
fletcher96 dscarlett
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I'm so sorry to read this. I've been looking for answers for several years now, and I'm only 21. I too have been belittled, degraded, and humiliated by doctors and nurses. I've been questioned on whether I purge or not. It's disgusting how they treat us women in the health care system, and something needs to change. When I get my diagnosis - whether it be MS, fibromyalgia, lupus, whatever - I am going to do something about it. It's sexism in one of its purest forms. I keep reminding myself that I am intelligent and intuitive. I am not anxious - I am in pain. And I never doubt myself. Keep going!