[creepersgonnacre...]

Upsy Daisy you may well have MS it is an autoimmune condition or you may have lupus as that can damage the CNS as well. It is rare but it can happen.

I wouldn't be driving as what if the worst does happen?

No one really gets it but I don't have my license and I get the daydream/blank outs regularly and I am afraid to learn to drive.

I am surprised given you have been positive to anti-dsDNA you have not got the SLE diagnosis as that is unique to SLE.

[UpsyDaisy]

LoopyLupie - I was a little surprised I haven't been given a diagnosis of Lupus (SLE) too. I was only antiDSDNA positive once, and further testing has been normal. My Neurologist seems to think other than my memory issues I don't have any other symptoms, but I'm inclined to think I have a lot of them.

Do you mind if I ask about the day dreaming/blacking out episodes. We're you given an explanation as to what was the cause. Is this linked to Lupus (SLE)?.

Not sure what to think in regards to MS. I had a brain MRI in 2009 - clear. I had another in 2011 which was also clear of lesions. Given I was symptomatic I'm not sure what to think. I prefer not to Dr. goggle LOL, so don't know.

I just want an answer to all of this. I'm happy with anything, so I can deal with it and get on with life and helping my kids. It's the prolonged waiting that has been SO frustrating.

[MUA]

Sounds like Pettie mayle (sorry I don't know how to spell it) or as the other ladies called it "abencing" its a form of epilepsy.Your eyes roll back (you can't feel it and unless people know what to look for they dont notice it either). I know when I am about to have a full blown siezure because I start to absence one after the other after the other, but I am very lucky that I very rarely have them.

For example you can be talking and totally forget what you were saying to the person you were talking to, you day dream alot and its easy to drown people out, you just get short term memory loss ect. It is very frustrating. I have mild epilepsy and this happens to me if I don't have my medication. It happens when the electrodes in your brain become out of whack. I would be seeing a Neurologist and having a EEG done. Better to be safe than sorry.

I can drive but only if I have my medication to control it.

[Catolyn]

UpsyDaisy - not all MS patients have detectable brain lesions on MRI (I think it's about 5%). I have Devic's disease, a form of MS, and while my brain MRI's are always clear, there's a lot of damage on my spinal cord. It took a long time (6 years, in fact) for any doctor to decide to order an MRI for it though. So there's something to think about asking for there maybe.

[UpsyDaisy]

Thanks.

Catolyn - I've asked about getting a spiral MRI some time ago and was told by my Neurologist that there was no need based on my symptoms at the time. It's definitely something I will ask again this week. ETA - I'm so sorry I've just read briefly about your condition. Your correct it does sound similar to MS. The only thing that stand out to me was the onset in relation to infection. My episode in 2009 actually mimiced a stoke, and SPECT results sat stoke, but MRI clear, so apparently not a stroke. It all started 1 day after getting over a severe case of Gastro. I recall DF having just caught it that night, severely, and telling the ambo's to stay away from him. Poor guy had to watch the 3 kids with bad gastro. Never had it since though.

This post has been edited by UpsyDaisy: 18/02/2012, 01:00 AM

[Catolyn]

Thanks.

Catolyn - I've asked about getting a spiral MRI some time ago and was told by my Neurologist that there was no need based on my symptoms at the time. It's definitely something I will ask again this week. ETA - I'm so sorry I've just read briefly about your condition. Your correct it does sound similar to MS. The only thing that stand out to me was the onset in relation to infection. My episode in 2009 actually mimiced a stoke, and SPECT results sat stoke, but MRI clear, so apparently not a stroke. It all started 1 day after getting over a severe case of Gastro. I recall DF having just caught it that night, severely, and telling the ambo's to stay away from him. Poor guy had to watch the 3 kids with bad gastro. Never had it since though.

My symptoms/attacks began after the first time I got a coldsore at the age of 22. It's mostly related to the herpes-type virus family but can be triggered by others so I would definitely keep that in mind next time you see a neuro. It's a crap disease to have (aren't they all though!) because it's so rare, most doctors have never even heard of it let alone treated a case.

I hope you get some answers, I was in limboland for 6 years. No fun at all.

[risa80]

sorry you are going through such a hard time UD

My memory has not been the same since my first dose of seretonin syndrome - it was that which triggered, my arm tremor, memory issues, vision issues and all sorts.

Though now got a diagnosis of Dysautonomia so that makes sense for some of it I guess - autonomic nervous system sh*tting itself more or less!

When do you see your neuro again?

[UpsyDaisy]

Risa - I had an appointment booked for yesterday, but my Neurologist was sick, so they cancelled it. He normally wouldn't be back in town for another month, but is coming again Mid March - so my appointment isn't til then.

[risa80]

Ah sh*t, that's annoying. I hate waiting!! I suppose mid march isn't too far away.. xxx

[Overtherainbow]

This must be frustrating and concerning for you. I don't have anything to say to help but wanted to say you are doing the right thing not driving. A friend's mum died when she blacked out hill driving. It was a tragic loss that they will never recover from but thabkfully her children weren't in the car and Bo other vehicle was involved.

I hope your health professionals can find a solution soon and get you healthy and driving again.