Can anyone Help with Brain Scan and Underlying Problems I Have Been Experiencing?

For some time now I have been getting to many headaches they will be very piercing and make me quite nauseous enough that I just cant complete any activities and end up going to sleep. No sort of pain relief works for me I have tried them. It has even lasted two weeks without giving me a break that was awful and still didn't respond to any pain relief I could provide. On the other hand I have also come across times when my memory is not bloody working right losing my marbles type of thing forgetting simple things misplacing things losing bank cards medical card to the point iv handed them to my mum to look after, I forget to take tablets unless someone reminds me, put food in the oven with no gas on until I take it out and see its still frozen. Also just yesterday I got tired like us lupies do so I had a lay down during that time I got really dizzy where it felt like the room was spinning I got up to get to my mum and seemed to stumble backwards like I couldn't control my balance and landed on my back crying for my mum to come (owwww).

However yesterday was my follow up outpatient appointment to st Thomas hospital lupus clinic and I only explained about my headaches and memory loss and there said they wasn't stressing there selves out with this as its nothing that didn't explain what may be causing it. However did give me the option of a brain scan MRI to reassure me, now I am (beeeeep) myself if there is anything that could possibly be wrong after all these symptoms they join together to seem like something is wrong with me bloody brain I also have Hughes syndrome the blood clotting disorder could this be connected at all. Has anyone on here been like myself and what was the outcome if not what can I expect any ideas of what could be causing it. Thanks for reading

4 Replies

  • Hi Metoyou, your problems sound very similar to mine, but mine come and go, fortunately or it would drive me mad. Could you be EHS? Have a look at the ES-UK website. Do you use a mobile a lot and do you live near a mast? Whenever I come on the computer my headaches and earaches return - I am definitely EHS. I don't have tests anymore as the problems just get worse with tests and I avoid scans even mammograms. I do have dental x-rays sometimes when the dentist says it's essential, but was in bed for 4 days after a full one a couple of years ago with pains all over my body and feverishness. Couldn't do or concentrate on anything. Hope you get to the bottom of it, but with so much stress on our bodies from so much Electro-magnetic radiation and other stuff, no wonder so many of us are suffering.

  • Hi Metoyou, I have both Lupus and APS and have experienced very similar symptoms to those you are describing. You mention you have Hughes syndrome ( APS) but don't say if you are on any medication for this. I take clexane which I inject everyday and have found it deals with the symptoms you describe. Perhaps it would be helpful to get an appt with your APS consultant as soon as possible. The MRI is not at all painful and can be helpful in diagnosing your problem, mine have shown definite damage done to the brain by the APS although my neurologist tells me this does not happen in every case, and the blood thinning has definitely helped with this.

  • Hi Metoyou, I suffered with the headaches exactly as you described, also ended up with memory loss, confusion, ballance, emotions, etc.etc. last april/may. Specialist gave me MRI Scan and found lupus had damaged part of the brain. I was diagnosed in july 2011 with lupus after having a lower leg amputation caused by blood clotting with lupus. Please don't be frightened by what has happened me, amputation probably could have been avoided if my previouse rheumy specialist had put a bit effort in, (3 years of blood tests etc and didnt once mention or think about lupus, by the time someone better at a better hospital took over the lupus had really taken hold. They tested and diagnosed me in 24 hrs.) After my MRI scan i was given 2 lots of Chemo and other Drugs to knock the Lupus down, This is all painless, (and you dont loose you're hair as people think with chemo, it's not the chemo, but other drugs given with it that causes hair loss). I still have problems with the brain and i am waiting to have more chemo as they don't think the first 2 were effective enough. I am on warfarine to stop the clotting and keep blood flowing to all vital organs. If you have been offered an MRI Scan take it, and any other tests they offer. none hurt and they all help to keep you well, early diagnosis of problems with lupus is the most important thing. if left like mine was there is no going back once the damage is done. you will adapt to most of the symptoms you are having and get some normality back. Please dont worry about what ive said, get you're scans now so they can sort you out and get you back in the land of the living. Please ask if there is anything you want to know. Wishing you well. Dave x

  • Hi, I have lupus anticoagulant plus SLE (neuropsychiatric). Have had same symptoms. my MRIs show brain lesions from what St Thomas consultant said are TIAs - mini strokes. As my newest MRI shows new lesions I've had to go back on Warfarin plus doctor tested my cholesterol = 5.1 so he's also put me on 20mg simvastatin. My head feels clearer though having weird dreams e.g dancing penguins, lol.

    IMPORTANTANT - chase up MRI results at St Thomas' as I only got told 4/5 months later at my appt that I had new lesions so I should have been back on warfarin a lot earlier. As I hadn't heard I thought my scan was fine.

    All the best. :-):-)

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