Round and Round we go

Well one would have been forgiven for presuming that the diagnosis of fybromyalgia was the end of the road, but no, the bloods for immunology threw up a little bit of a surprise and the all too rare (in my recent history ) of positive ANA reared it's little head again and has forced a follow up appointment in about 3 months although the immunologist suggested that a further diagnosis other than that already received was highly unlikely. And I dutifully batted on as normal. Except that on Sunday 20th I woke up and was much wierder than normal ( even for me ) and it became quickly obvious to both my partner and I that this was something new, and I was in quite a bit of trouble, indeed we were both convinced that even though I was not in any obvious pain that I was either having a heart attack or a stroke. So a trip to A&E was called for. On arrival I was immediately seen by the stroke team and put under obs in the emergency room. After a few hours when the BP and temperature was back under control and after a clear EGG and MR I, it was concluded that I had suffered some kind of TIA and that I was out of any immediate danger so I was discharged with a shiny new appointment booked for the TMA/STROKE clinic on the following Friday.

At my initial TMA appointment my consultant confirmed that his opinion was that I had a minor TMA but because of my history and an MRI that showed a very healthy brain it was highly unlikely that the event was stroke related and that he was confident that something within my history and currently undiagnosed was the cause although he took the precaution of prescribing me 6 weeks of Atorvastine, Ramipril, and Clopidogrel to combat my suddenly startling raise in BP and Cholesterol and booked me for review in6 weeks time. He also told me that hopefully it would prove to be a one off event but also warned that TMAs often prove to be a recurring early warning of other problems and could occasionally repeat over the course of several months with quite long remission periods separating events until such a time as the underlying cause reveals itself.

So still none the wiser off I toddled on my merry little way once again.

Then on Monday ( YES MY BLOODY 50th BIRTHDAY ) early into a mid afternoon dog walk I realised that I was in some considerable trouble, I was out of breath, shaking and in some considerable pain. I turned for home just as my eyesight started to blur and I could feel the dreaded fatigue rushing upon me with unusual haste. It was nothing short of a miracle that I got home and bundled both myself and the dog through the front door and myself onto the couch as I had needed to stop on a number of occasions as the blue mists of a faint threatened to overcome me. I had an hour or so on the couch then found myself talking to a neighbour over the back wall as the buzzing I had suffered in my ears since earlier in the day suddenly massively magnified and moved to the centre of my head the pain was startling I completely lost all awareness of my surrounding and lost any feeling in my limbs other than that of alarming cold..........off to hospital again then!!

After an overnight for tests including CO, MRI, X-RAY and bloods and the conclusion today that I have had another much more severe TIA but they are conclusively not due to any threat of stroke. In apologising for not yet being able to identify what is going on other than raising the concern at how quickly I had experienced my second attack the consultant asked me to tell him some of my story, when I got to the part of lupus being dismissed due to a lack of positive ANA was astounded as he revealed that all of my last 4 tests have included raised ANA indeed last night and this morning the results were a very raised positive. And so I was discharged with a referal to Rheumy this time in Doncaster with a query....................yeah you guessed it. LUPUS

And so the cycle begins yet again

6 Replies

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  • So sorry to hear and I bet it was very scary for you. Did any of your tests show anything other then the blood work? I mean were MRI and all normal? I have had migraines that cause some of the symptoms you list but not all 4 limbs I do not think.

    I hope they find out what is going on and you do not get a run around from the Rheumatologist. It will be interesting to see what Ros says.

    Stay strong, I know how hard it is not having answers.

  • Atribrat thanks for your reply, please get yourself checked for Hemiplegic Migrane, mine was negative

  • I will ask my Neurologist who I have seen for years for them I do not remember them telling me the type of migraine I have but I was diagnosed with severe migraine disorder and often have numbness on one side of my body and face. I get botox, triptan nasal sprays, take neurontin and a beta blocker for them and see my Neurologist every 3 months. I have had CTs, MRI of the brain and neck. Maybe that is why he told me if I ever get the numbness and it was not followed by the headache to get to the ER.

    My mom and son also get migraines but no one in my family has them as bad as mine or as often.

    Glad your tests were negative.

  • I think I may have suggested to you to see Dr Graham RV Hughes who is at the London Bridge Hospital, London. At the very least, you should ask your GP to refer you to Dr David D'Cruz at St Thomas' Hospital, London on the NHS. Dr D'Cruz is also at the London Bridge Hospital and was taught by Dr Hughes who has an international reputation in lupus.

    TIAs,migraines,MS-like symptoms, grand mal and petit mal are all symptoms of the antiphospholipid antibody (Hughes) Syndrome.

    As I have already mentioned elsewhere, a positive ANA is insufficient for a diagnosis of lupus. There are many people who are ANA positive and perfectly healthy.

    It seems you have not been seen by a lupus specialist. Dr Hughes would be a private appointment but Hughes Syndrome is named after him and frankly you have already waited for a long time and are no further forward. In fact, you have already had 2 TIAs and IMHO, you should have already seen a consultant.

    Please consider seeing Dr Hughes if possible. Listen to him here:

    There is more information at the LuPUS Message Board: lupus-support.org/LuPUSMB/i...

    With good wishes,

    Ros

  • I agree with Ros. TIAs are typically a symptom of APS (Autophospholipid Syndrome).

    In your post you talk about raised ANA. The ANA test is a generic test for various autoantibodies. If you simply have a positive ANA then getting more thorough testing by a rheumatologist is the perfect next step. The rheumatologist should perform a physical exam, take a full history of symptoms as well as order a full battery of tests for specific autoantibodies so that you can determine exactly which AI disorder you have and which treatment is best.

    From what I understand, not all rheumatologists are knowledgeable in APS so you may need to find one that is.

    Hugs and best of luck.

  • Hi Adrian, my goodness. I have to say your story is of no surprise to me. I take particular notice that u are being referred to Doncaster. Do you live in the Doncaster area. I do and have been under a consultant at dri for 30 years because I have SLE (lupus), I have no wish to unnerve you in anyway but after all these years this is how my situation with my lupus stands........ Now registered blind, my sight very poor and constantly decreasing, WHY..because my consultant had me on a medication for over 20 yrs and he shouldn't,t have, my face is now worse than ever, I now won't go out at all because of being ridiculed by my facial appearance due to years of being told to use a steroid cream that is known to thin skin, my nose barely has skin on it. My health and general well being is so poor, I have no quality of life.

    Please please promise me that if ever you are unhappy with treatments, medications, diagnosis etc etc do not be submissive, follow your gut instinct as nobody knows their body better than the pe son themselves, do whatever it takes till you are happy, satisfied with how your health is being dealt with. Speak out and dig your heels in and whatever you do if by chance anyone perscribes chloroquine (nivaquine) back heel it, insist on an alternative cos that's what took my sight and my life away. Always here if you think I may be able to assist you if you have lupus.truly hope you get sorted and get well soon.

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