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I dont know which way to turn....may need Rizzo

Hello…again. I did a post ‘im soooo upset’ and had some lovely replies. I’m still having to use my phone to get internet access since those terrible storms so excuse its layout. i gave the neuro my brain mri report which basically said… There are 3 tiny foci of ncreased flair signal within the deep white matter of the right frontal lobe. Conclusion was…tiny foci of increased signalSignal within the right frontal lobe may reporesent earl microangiopathic ischaemiaT but are within normal limits in a patient of this age (38) there is no feature of demyelination presenting problenms have been severe pain between shoulder blades, rib pain, bladdewr irritability, bowel problems loss of control, myoclonic jerks, lethargic, balance, difficuly in processing information at times New symptoms, intense pins and needles coming in waves over my heads and face, feel spaced out, confusion, worsened balance , tremors right hand, numb toes, tingling weak legs in ,y consultation 2 days ago the findings of the LP were inflamation in the CSF and in the bloods but not inCNS He unconvincingly says its not 0$ but has ordered another brain mri, looking for a change or increased white spots. Whatever they are. He did say this could indicate rheumatic disease which my gp is arranging an appt. My questions are is my origonal stating no MS? if the inflamation isnt in tthe CNs why would he want to do anothr brain MRI is it time for me to let go of possible MS or do i keep fighting? he said my symptons dont neatly fit into a box but from i gather, few MS patients do. Just dont know where to turn. anyone PLease HELP LOVE mANDYMOO X

“tiny foci of increased signal” basically means tiny white spots which is another name for tiny lesions.

“microangiopathic ischaemia” means restriction in blood supply to the small blood vessels.

They use a (stupid) rule about one lesion per decade being OK - so 3 in 38 years is OK according to that. It’s a stupid rule because normal, healthy brains do not have lesions. Yes, someone’s more likely to have them as they get older, but they are there because of something and it ain’t our age. (To be fair, these lesions often don’t cause symptoms so there is some rationale behind them dismissing them.)

“no feature of demyelination” means that the lesions aren’t the right size, shape or in the right location to suggest demyelination, and therefore MS.

The LP results (oligoclonal bands in both CSF and serum) suggest that you have had some sort of systemic infection, i.e. an infection that affected your whole body, so not something that was specific to the central nervous system. This doesn’t rule out MS, but it does make it less likely.

Changes in your brain MRI will give the neuro more clues - it might reveal MS-typical lesions, it might reveal other abnormalities that point to another condition. Basically he’s stuck, so looking for more info / more pieces for the puzzle.

I’m surprised you haven’t had your spine scanned though. Very strange omission.

From your MRI & LP results, and the wide array of symptoms you have, I would have thought that MS was very unlikely. (Please remember that I am not a neuro though - I’m not even a medical doctor!) So, if I were you, I would keep fighting for a diagnosis, but be very open minded about what that might turn out to be.

It’s really good that your neuro is staying interested and trying new things. Try and hang in there.

Karen x

Hi Mandymoo xxxx

You seem to be in practically the same position as me x

I’m totally confused now too and wondering if I am or am not not still in MS Limboland??

I haven’t had an LP but my first brain scan showed unspecific white matter lesions in the frontal lobe and an enlarged pituitary gland.

The second one said “some non specific foci in the subcortical distribution which I do not think is of any clinical significance” but no mention of the Pituitary gland this time - my cervical scan is clear.

I don’t know where to go next as he has not indicated any follow up at all. I’m going to write him a letter saying the results make no difference to the fact that I’m still experiencing symptoms and asking what next? - & am seeing the GP on the 9th so hope to pin something down with her too

Like you though I really don’t know whether to let go of MS altogether but I’m finding it hard because I would say 99% of my symptoms & signs fit!

More than that though is the fact that after all the tests I’ve been through over the last couple of years - they have not come up with any kind of explanation or alternative diagnosis!!!

xxxjenxxxx

Thank you rizzo. Thats explained a lot and helped me come to terms with the real possibility of it not being ms. he kept refering to a clear mri spine scan in the consultation but that was 8 years ago when i was diagnosed with arhritis. My friend that came with me said that by the way he spoke he thought it was 12 months ago, so i have rung the secretary to make sure he knows this. im extremely concerned by these intense tingly feeling that comes in a wave over my head starting on the right. Its very very frightening and i get confused, spaced out and find it very difficult to process info. Its happened about 8 times today already! i know i have a wide aray of symptoms but to be honest a lot of them go back years but i thought if i dont tell him everything that that could complicate or delay diagnosis…turns out the opposite as it happens. I have always suspected i have lupus as i have a very prominent rash over my cheeks and nose and this would explain the resulta i think. jen…do not give up on yourself. You know as well as i do that we are ill and we need answers and meds. Keep going my lovely as i shall. i just wish i could find another forum as supportive and honest as this one…almost feel bereaved to let it all go, sounds strange i know but for a while i belonged somewhere for the first time in years.!!! thank you both again Much love mandymoo xx

I feel the same Mandymoo - I think that’s why we are so convinced it is MS and so unconvinced that it’s NOT MS xx

NOBODY in ther right mind would WANT MS but when you can relate so clearly and specifically to practically EVERY symptom - add to that the fact that there is no convincing alternative given - you just can’t help but identify xx

Whether it is or isn’t MS - the symptoms and the suffering are one & the same xxxxjenxxxx

I think the bit thats getting to me is that he said just because somethings not there now doesnt mean it wont be in a year or 10 years time. I cant be in limbo for that long! If its not ms then its not but i wish he would have said it wasnt with some conviction at the very least. he also critisized the mri machine at the hospital where i had the first brain scan done which is one of the reasons he wants me to have one done at the qe in birmingham. He alsoo wants to see the scan rather than read someone elses interpretation of it. i have looked up inflamation of the peripheral nervous system and a lot fits but no where near enouAll of my sypmtoms. i just have no idea which way to turn…i really dont! hang in there jen. Hopefully your symptoms will be more text book than mine for what ever, which ever conditions! haIt is . I have no idea what my phone is typing now as the screen has gone black. Bloody broadband! take care. m mandymoo

Rizzo\Karen… could i just ask… if my new brain scan shows lesions that are charactaristic of ms could i be diagnosed with ms even though the inflamation in blood and csf was in the PNS not the CNS? many thanks as always mandymoo x

Hello Mandymoo,

I have SPMS but I also have Lupus (SLE) which gives you a butterfly rash on your face. The symptoms are very similar and difficult to know which is causing which. Have you requested seeing a rheumy if you already have arthritis, it might just take you down another route.

Hope this helps and I wish you well.

Janet

x

Thanks janet. my neuro suggested that i ask my gp for a rheaumy referal. I’ve been talking to my gp about possible lupus for months so maybe i will get the referal now after all. Ms and lupus sounds dreadful! i have feared ive got both for a while but after this last neuro appointment my head feels in a bit of a spin!! thank you so much for replying! can i ask which diagnosis came first? i just dont know whether to keep persuing the ms line as well as lupus or what to do really. anyway, thx again take care mandymoo x

LP results do not rule out an MS diagnosis. So, yes, if new lesions support an MS dx, then it’s entirely possible. The neuro has to be sure that there is no better explanation. (Lupus can cause lesions that look like MS lesions btw.)

If your o bands were in both CSF and blood, then your whole body was affected, not just the PNS (or just the CNS).

Kx

Oh karen im really confused now lol. Ive listened bk to the recording of the consult and the neuro (epileptic speciality not ms) says… no infection in cells and protein and sugar levels fine too. NO inflamation found in the nervous system itselfQ found a slightly unusual pattern in that i’ve got some evidence of perhaps some body inflamation thats a non specific thing…so… Signs of certain inflamationThats a non specific thing In the lumbar puncture but also in the blood tests that i had as well…we never know what that quite means. … MS is inflamatory problems in the brain only and we didnt see signs of thatQ well that was pretty much a transcript of what he said. So…is it possible to still have MS? and is that right that ms is only (inflamation) found in the brain?

I think(!) that means that there are signs of Inflammation (for that read immune response to something) in your body, but not solely in your CNS and that there’s no way to tell what it’s from. When he says brain he’ll mean CNS because MS only causes inflammation in the CNS. I think that’s what he meant anyway! And no, that does not rule out MS. It makes it less likely, but it is still possible. Kx

Karen, thank you soooo much. Tbh i dont know how you dont have brain ache! Lol. mandymoo x

Hi,

My neuro secretary rang today and has confirmed that the doc wants me to have a spinal MRI as well as the brain.

He wrongly presumed that the first neuro had already done one.

Just gotta wait and see again I guess.

Mandymoo xx

That’s good news Mandymoo xxjenxxxx