A bit of a nightmare going on still.. what to do?

[LottieLou96]

Heya there fellow Lupies,

I'm facing a wee bit of a loss at the moment with my neurologist. Anyone that read my first post knows my story of lupus and my neurological problems possibly resulting from lupus damage to the brain or something else, who knows at this point, which haemorrhaged back in April, and on scans was actively bleeding in August.

Anyway, I had my urgent new MRI head scans on the Tuesday afternoon, it took a couple hours, I kept seizing apparently, I didn't think I was, but after a few hours was complete. They seemed worried and said id be seeing them again. I was like for what? But they didn't answer..

Anyway Wednesday morning came and the neurologist secretary rang and told me to be prepared for a call from my neurologist in the next day to discuss my MRI results and plan. But the last few days have come and gone with no results.

After a seven month delay after my neurologist didn't look at my initial MRI head scan, which was abnormal, (finding out through my rheumy), it's crazy how she can say she'll ring me and then not. Likely I think she's messed up big time. But I am quite forgiving, I'd rather just sought the issues at present with no more delays.

Otherwise I'm stuck in limbo for longer not knowing what to do. God's plan will come to pass, I guess I just need to be more patient.

I guess it's just hard sometimes to have seizures at work, and shrug them off, and continue, without knowing whether my brain is still haemorrhaging as it was on the previous scan. Or knowing if this headache or blackout is proof of a growing lesion, or new haemorrhage.

I guess I'm in the safest department at the moment, lucky me haha. Working in emergency. So if I blackout or seize too long I'm sure they'd be on it quickly. It's not easy in a new job though to have so many variables I can't control.

Anyway, that's my venting out of the way, I just want to know, I'm intrigued and inpatient, rather than scared, which I know sounds weird, but it's almost a relief to know what's happening, plus I'm a medic so I think it's all interesting.

Will update you all when I know what's happening, till then I doubt I'll sleep. The classic insomniac. But I guess I can't jump the gun just yet. But when I get unilateral weakness and issues as I do with the seizures it begs to question if it's another stroke. Who knows?

Anyway enjoy the weekend lupies.

Bless you all, Lottie

[StriatedCaracara]

Hi Lottie

Just read your post.

Have you seen 'QD158 Diagnosing Neuropsychiatric Lupus' on YouTube posted only Feb 9, 2022?

(I can't seem to put in YouTube links here so need just to Google)

I watched clip for first time yesterday and was intrigued. It talks about impacts in break in 'blood brain barrier' in lupus cerebritis. A concept I've not come across before. (Also, it seems that more folk may have lupus cerebritis than is recognised...)

Maybe chase neurology, or go for second opinion as they may turn things around faster.

Take care. Maybe ease up. God bless xx

[LottieLou96 in reply to StriatedCaracara]

Thanks for your reply SC,

Seen your response. I think it's great you are s science teacher with passion, and helping people from the state schools. People wouldn't believe the disparity of public/private that enter med school. I'm sure you'd of been plenty clever for it, but the route you went down is God's will, and it led you to where you are today. Nothing is by chance, and gracious however many times we screw up, he accepts us home and steers us back onto the path meant for us.

How crazy to think the direction of our lives changed in many ways. At least the approach we took did due to illness or hardships or even worth and confidence in self. I know I can vent, on occasion, mainly due to impatience.

Myself developing lupus, I could cope just about with, but the loss of the family unit and understanding I took worse. But on reflection, it made.me.lean on God for resilience, the one big guy that never fails.

I can't be active bleeding now surely. Stranger things have happened. God again is protecting me at this time, for sure, and that brings me much comfort.

HCQ effects and benefits range far and wide dependent on where the lupus affects. If that's what it's helping you with, that's wonderful indeed. See next what happens. Maybe a joint or two may ease, maybe the chest tightness will go?

Neuro lupus as you said is pretty poorly clarified. From what I've seen it is inflammatory, with white matter changes of pre dominance as you say. I reckon most.lupies have migraines I doubt the insignificance of this. Again, I must wait a few more days or get another opinion. I would if it was plausible, just get myself checked in ED, but we are so short staffed as it is.

I'll have a look at the YouTube video you reference. Like yourself, we are medically and scientifically minded. I feel like knowingore.the better helps.

I'm glad youve had a few.good things happen since speaking last, we can't always move in a straight line. It's kinda like playing Tetris, it looks like how could things go so skewith and not to plan, then later.on you realise everything has clicked into place. I am testament to truly say that things have always worked out.

I am a more understanding and caring person for it. Our desire to help others may have been propelled by our own parallels. And the knock on effect of helping an individual could change the world.

All the best SC, thankyou

Lottie

[StriatedCaracara in reply to LottieLou96]

Knowing more helps. The hardest thing I find is resting up. I'm so used to maxing out.

After lifetime of pushing myself, I find getting the balance right is so hard. ...

Being forced to be more still, and take care...

Hope you are feeling bit better and things get sorted quickly with neurology dept results and their help is spot on. Take care. Look after yourself well.

[dg70]

This sounds worrying. I suggest you chase the neurologist up asap. I had a SAH 10 years ago, not sure if it was anything to do with Lupus as I was undiagnosed at that point. I had a series of migraines and then bang, crushing head pain for 20 mins. Taken to A&E. Nothing on CT although it was a half day wait as they thought I had meningitis. Lumber puncture revealed blood so blue lighted straight away to a brain hospital. Had a stroke in the angiogram but had to spend three weeks in a neurological unit taking the vasospasm tablets and being monitored 24 hours a day. Less than 50% of us survive this.

I hope your bleed has not recurred from the MRI results and I'm hoping if there was a sign of bleeding they would have admitted you then and there. I concur that it seems that you should be taking it very easy until you get the green light from the neurologist to take up normal activities especially if you are blacking out with possible strokes. I am extremely surprised you were not admitted when the bleed was found given the dangers of clots??

[LottieLou96]

Thanks dg70,

It's all quite strange and alarming. It all makes little sense. As I say the rheumatologist was pretty infuriated and horrified at the time. She said I should of been admitted there and then for more scans, LP and biopsies. But as I say unfortunately my scan results slipped through the cracks and weren't acknowledged for 7 months. So the initial urgency and protocol is out of the window.

I have kept ringing my neurologist to no avail, they asked me to stop ringing, that I will find out when I find out, and that currently I'm being discussed with the multidisciplinary team. Again they don't clarify why

At work, I received four calls from neurology admin asking me to attend my appt on Tuesday at 4.30pm so they really seem a bit disordered as a team. But hopefully she will turn up on Tuesday and will discuss things. I have little confidence in her.

You are immensely strong to go through a SAH and lots.of treatment and pull through. Testament to your strong character indeed. Hopefully you recovered well from this.

It's hard with migraines and seizures and blackouts to really differentiate what's sinister or not anymore. I initially went for left sided headache and a change in my auras to the GP last year, as my migraines are right typically. Then I went with weakness in my right side, and some weakness in my left face, I was quite unsettled by this, alongside a new squint. But my GP thought it was all anxiety related. And as I say I had to blackout behind a wheel before she gave a drab letter referral to neurology to shut me.up.

My main deficits are that of not being able to understand how to write, or how to spell, or I can't understand speech if some one talks in my right ear. I told ya I'm strange. Can't do right to left, can't read 24hr clocks, and my.memory.appears quite patchy indeed. I seem to forget how to do things, like use a knife and fork or how to raise my.eyebrows or how to whistle. All just quite strange.

Thanks for your message, I will have to go down the alternate.opinion root very soon if I don't get the answers of anything.

All the best

Lottie

[BK47]

Goodness you are going through the mill! I can’t offer any advice as I have not experienced your issues. But I hope you can chase up the powers that be and get answers (and solutions) quickly. It is so worrying For you x

[dg70]

Don't give up keep pushing. you know when something is wrong. I found blood pressure meds (8mg candesartan) helped to some degree with constant headaches and occasional migraines. It took 10 years to get my Lupus/Sjogrens diagnosis from having my SAH and don't know if one caused the other? I will say either hydroxychloroquine or Pilocarpine have almost completely stopped my headaches but not sure which one works or both. I have not had a migraine for six months now either. I get foggy brain but yours sounds a little more than that. Don't ever feel a nuisance with your symptoms. It's your life that's being discussed without you. If I had been listened to a few weeks before, I may not have ended up in A&E with a burst aneurism. If you were born in 96, you're still so young. Let us know when you know.

[LottieLou96 in reply to dg70]

Thanks for the kind words of perseverence. I am indeed not use to so much kindness like there is on this forumI too had a 10yr wait till lupus treatment on HCQ which has been good in the last wee while. Your right that it seems to help with headaches and even the good ol' lupus fog.

I'll keep trying to beat the dead horse, of my neurologist, but yeah I don't feel too good atm, I wish A+E weren't so busy tonight, I was hoping for a calmer evening. Possibly even a once over from them.

I'll keep ya updated to see what the next few days bring

BW

Lottie (yes I am an old 96' lass, these things mature you in mind, body and spirit)

[dg70]

You can guess my age on that basis. Lets hope they see you next week and your around another 26 and more years. Glad hydroxy is working and hopefully you won't end up in your own a & e. Doesn't bode well if they mess around one of their own though. 😵

[LottieLou96]

Who knows, my neurologist has cancelled my face to face appt, and opted for a telephone consultation to discuss results. I asked if this was suitable to not even see me. She said that it wouldn't change the results or outcome. Told me to not work tomorrow and just wait all day for the results. She just can't tell me now?I'll just work off the stress of the unknown tonight. I just feel it's a bit harsh not to see me in person, like it's a cop out, for all the mistakes so far.

Fingers crossed it's okay news.

Will keeps ya updated

Lottie

[StriatedCaracara in reply to LottieLou96]

Hi Lottie

How did it go? Thinking of you as you hang in there. Hope they contacted you first thing. You should not have to wait in all day..

take care, Striated xx

[LottieLou96 in reply to StriatedCaracara]

Hiya there SC,

They made me wait all day, just for suspense, until nearly 6pm this evening.

I am quite assured but I'm also really quite confused?

My rheumatologist had already told me what and where the lesion and bleeding was -left parieto temporal region, sparing the right brain and I also read the formal results with my own eyes.

However tonight, the neurologist says the lesion is on the right frontal lobe.

The lesion hasn't grown in the last eight months and it's not actively bleeding it seems.

I'll get medication, lamotrigine, for the complex partial seizures and blackouts, to hopefully improve that.

I will need 6 monthly MRI head scans to ensure the lesion is monitored for the next 5-10yrs, as they are unsure if it's a tumour, or just damage. And some EEGs just to figure out all the seizure triggers.

So I can't complain in some ways, I'm just a bit confused, bc I read physically and discussed the MRI scan results from the initial scans. So how can it be in a completely different area of the brain.

So I'll try and call my rheumatologist asp and see if she can just reiterate the MRI scan results to gain confirmation.

[StriatedCaracara in reply to LottieLou96]

Just wondered, if it is autoimmune is it possible it could be transient and not permanent, but then crop up elsewhere?

Goodness knows why you had to wait in all day. Somehow I guessed it would be 6pm by the time they contacted you. You have done well keeping calm.

I hope and pray 🙏🍞🍷🙏 that everything is clarified quickly and that you get the answers you need, and confidence as things move forward. xx

[LottieLou96 in reply to StriatedCaracara]

Such a warming response SC,

God is always good despite the trials of the day or the darkness of night, his love remains upon us, working through us.

My neurologist and rheumatologist haven't discussed things seemingly. I don't believe that sort of structural damage or lesion can be transient. Lupus neurological symptoms are usually transient and don't appear on imaging, or appear as multiple small white matter changes. Its almost is like one of them is reading the wrong notes.

I haven't got formal result copies or MRI scan copies. I asked but got a no as a response. Again rheumatologist may be kinder in that regard.

Active bleeding was confirmed last time, yeah, so to me that coincides with blacking out and getting new seizures. As to what caused my head to have such damage? Idk. I can't get around how they can be in different areas. I think that it possibly could have been my neurologist reading things wrong. Not the first time .

The recent MRI scans ascertained change from the previous scan and gave a clearer image. I believe, which can often happen, is the radiologist will say no changes from previous scan, accept a right frontal lesion seen on contrast.

Idk, I'm obviously guessing things I cant know for certainty. Hopefully my rheumatologist will be kind enough to supply me with the formal results and bring clarity.

Many blessings

Lottie

[StriatedCaracara in reply to LottieLou96]

Hi Lottie,

Is there any way to put in a formal concern, in writing, that the results don't seem consistent?

I think we are entitled to copies of medical records (I guess this should include copies of relevant slices of scans).

Is there any way of getting a second opinion / going to a neurologist who could be better?

I hope you find a way of improving care received (including its coordination and consistency)?

Take care. Healing hugs and prayers xx

[LottieLou96 in reply to StriatedCaracara]

Heya SC,

So I got some clarity, which is some better news.

The left parieto temporal region is white matter lesions from lupus damage, my rheumatologist feels these are significant and caused my epilepsy but my neurologist isn't concerned.

My neurologist says that her concern was the right frontal region, which looks older, and isn't growing. She says my rheumatologist got the wrong end of the stick, and seems to have blown the left parietal damage out of proportion. She doesn't think that caused my epilepsy, she believes it was my right sided lesion.

So I am going to leave it for them to battle it out, my neurologist is at least interested on my rheumatologists take of the MRI scan. So time will tell.

In the meanwhile I can kinda breathe easy. I will unlikely figure out what the right sided lesion is from, I had a wee bit of a violent childhood and adulthood, so numerous occasions could be to blame.

I must always ground myself in God's truth and trust. He will make a way, where there seems to be no way.

Now onto looking at the lupus involvement in my other organs, once that's in check, who knows I'll be jumping from the rafters,

Blessing to you

Lottie

[StriatedCaracara]

This is better. Relief that Rheumy and Neurologist are communicating too.👍Think you did well to navigate all this and deserve a good treat or two.🍰💐

Are there any quiet versions of jumping of the rafters ....?

take care, Striated