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brain lesions, non on spine, and negative lp

Hi guys,

I’ve finally had my l.p. results in the mail. Negative along with the spine. I’m wandering what Neuro is going to say in September. He wrote in the letter results were very reassuring. He previously said from my brain mri he suspected ms. I’ve spent two months barley able to walk, pins needles, blurry vision, neck pain, spasms etc etc. I do feel better but this was the second attack this year, so I’m wandering when if I’ll go through it again.

I wander what he is going to say? I hate limbo and NEED an explanation, but I can see him discharging me. I’ve only just gone back work full time after being allowed reduced hours. I feel like a fraud even though I should feel happy I’m worried. I’m still fatigued and my limbs are heavy, my bladder is ridiculous which I need to see my Dr about (urgency/frequency).

Thanks

kel

I reckon that you are unlikely to get an MS dx. How many brain lesions do you have ? Also are they in the same locality. If you had several in different brain areas then you may get a dx of MS depending on your neuro. If you were with my neuro you would not get a DX of MS with a clear LP. I had 2 clear LPs withing 2 years (as he said some a negative in early stages).

He reckons you cant have MS if the immune system is not active in CSF

Moyna xxx

Hi Kel,

A normal lumbar puncture cannot rule out MS, so it remains possible you still might be diagnosed (I was, without ever even having a LP - and my VEPs were normal).

But as Moyna says, it does depend on number and distribution of lesions. It must also be established that they didn’t all get there at once, from a single attack, but that it’s an ongoing issue.

I tend to agree that probably, the evidence for an MS diagnosis is not there yet. However, I also don’t think it’s likely you will be discharged - not with symptom history AND clear evidence of brain lesions. This is clearly not “nothing” - there’s just insufficient evidence to say it’s MS, or exactly what it is. So I think you will be kept on the books pending further evidence, not discharged. You might have been discharged if they hadn’t found anything at all, but that’s not what’s happened.

Tina

x

Thanks guys,

I had three lesions, one left perpendicular and one on the right, the other in mid brain. I was suffering so bad with plasticity, I literally struggled to make it to the kitchen, I had to support my self on walls and furniture, my foot drop caused me to fall flat on my face three times and just general horrendous symptoms. I don’t know what’s worse, contemplating a dx of ms, or a nothing. I’m scared it’ll happen again and I’ll be back at square one. This has been going on since my optition recommended the referral in January, I had two months bad with various things, weakness so bad I couldn’t hold my baby safely. Then started again in April.

Feeling Fed up just want an answer one way or another. I know you all understand, it’s so good to have you all. Nobody can understand really at home. I’m a positive person and don’t say much but I think today has deflated me, I thought I’d be getting a dx of some sort soon, so I can get the right help if there is a next time, and not be left house bound with no walking aids and a baby to look after as well as another child.

Sorry for the moan. But it is a big help to know you’re all here and care. X

Thanks guys,

I had three lesions, one left perpendicular and one on the right, the other in mid brain. I was suffering so bad with plasticity, I literally struggled to make it to the kitchen, I had to support my self on walls and furniture, my foot drop caused me to fall flat on my face three times and just general horrendous symptoms. I don’t know what’s worse, contemplating a dx of ms, or a nothing. I’m scared it’ll happen again and I’ll be back at square one. This has been going on since my optition recommended the referral in January, I had two months bad with various things, weakness so bad I couldn’t hold my baby safely. Then started again in April.

Feeling Fed up just want an answer one way or another. I know you all understand, it’s so good to have you all. Nobody can understand really at home. I’m a positive person and don’t say much but I think today has deflated me, I thought I’d be getting a dx of some sort soon, so I can get the right help if there is a next time, and not be left house bound with no walking aids and a baby to look after as well as another child.

Sorry for the moan. But it is a big help to know you’re all here and care. X

My neurologist said I had ms based on medical history, clinical assessment and brain mri which showed multiple lesions. I was referred to the ms specialist next who said it was unlikely I had it because my spine was clear of lesions and my L.P. results were negative but was confused because my brain mri was typical of ms. Looks like I’m back in limbo land again. I’m a 56 yr old lady and my neurologist thought it was ppms. I see my neurologist again in Sept. How could she get it so wrong and I feel like a fraud now. I’m back to square one and none the wiser as to what has caused the lesions and ms like symptoms.

I am reading your post and that could be me. I’m 57 yr old woman with very typical brain lesions but lp was clear as was my spine of lesions. Based on my clinical assessment, history and brain lesion, I was finally diagnosed with MS probable primary progressive about 2 months ago after almost 2 years of going back and fore to the hospital. My Neurologist was adamant from the start I had ms but my specialist was not so convinced. My last brain scan showed very clear typical lesions and I think this visit he took on board my history and the fact I come from the Orkney Islands reported as being the worst place in the world for Ms. He finally gave me my diagnosis explaining I was in the 5% group of people that has ms without it affecting the spine. Perhapes you also fall in this group. You should bring this up with your Neurologist. Good luck!