neuro appointment yesterday

Hi,

Saw neuro yesterday and i told him about my vision problems where i see things appearing like a flock of birds or other objects.

He said i should make an appointment with an optician and thinks i have an infection in the cells in my eyes and does ot think its related to any other of my symptoms.

Im booked in for another spinal mri due to images not clear on last one. He did say it looks like i have multiple spinal lesions and atrophy of my spine to that of a 80 year old…im 57.

He is hoping that this mri will give him the answers needed to make a diagnosis without a lumber puncture. It was an interesting meeting in some ways as he was not too interested in my brain lesions as he said they can not cause the problems with my lower body. Interestinly he said that anything that shows on the spinal cord is not normal. I have read several posts where lesions of the cord have been found and people have been told there is nothing wrong, even if they are old lesions damage has still been caused.

I still come awa from appointment with more questions than answers, but by friday the 13th may i should have a clearer picture of whats going on or maybe even a diagnosis.

Christine

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It’s so frustrating all the waiting isn’t it? I was diagnosed with ‘likely MS’ from my spinal MRI & a physical. I’d check with your local hospital and see if there’s an Emergency eye clinic. I phoned mine and told them about my eye problems, explained it wasn’t an ‘emergency’ as such but I was concerned as an MS sufferer and they booked me an appointment for the following week.

Hope you get some luck with it

Sonia x

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Hi Christine

Your post really has me puzzled. I’ve been dx with PPMS but only have brain lesions. I even had a lumbar puncture to verify my dx and it was positive. I have many physical limitations and my Neuro, who specialises in ms has assured me that my symptoms are in keeping with my dx no matter where the lesions are.

I have a spinal cord injury which could be partly to blame for a few of my symptoms but he definitely thinks that my MS is to blame for things like my balance, fatigue, spacticity etc. He has made it clear that just because I have tiny lesions in my brain it’s not going to affect different parts of my body.

I’m sorry if this is leading to more confusion for you but I imagine I’m not the only one who only has brain lesions and is affected in other parts of the body. The lumbar puncture isn’t as bad as some make it out to be, in fact it’s fantastic when you’re desperate to know what is really wrong with you.

Cath x

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Thanks Sonia,

My local hospital does not have an emergency eye clinic. I am going to make appt to see optician. Eyes not been too bad over last couple of days though.

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Hi Cath,

I did say i came away with more questions than answers and a little frustrated. I dont know what to think any more. Even if he did the lumber puncture and it was positive he would still need evidence of spinal lesions. He kept saying that my cord was not normal which he could see from the poor quality last mri and the one im due to have later this month is hopefully to show the lesions more clearly.

Im not sure what he means by only spinal lesions could cause the damage to my lower limbs. I dont think i have major problems compaired to some. Its mainly numbness,other sensations, tight muscles which makes me stiff when walking and some urinary issues.

I only have 2 brain lesions, did you have alot more at the time of diagnosis? or maybe it makes no difference to the number.

Christine

Hello, Christine.

My original diagnosis; some ten years after the start of symptoms, did not specify any type of MS. On my last appointment, the neurologist said that I had SPMS. He was completely wrong. I have PPMS.

I’m wondering how much easier it is for a neurologist to be vague and procrastinate to the nth degree. How much are they being held to account for their positive diagnoses? Just about every other profession is tied to some form of measurable substantive assessment process. Am I being cynical? Is it to do with curable or incurable and its impact on claiming benefits?

Anyway, I hope you can get some definite answers soon. I did all the eyesight testing about six years ago before the consultant decided there was nothing he could do for me. Now, like everything else, it’s just another thing to manage. At least my wife is happy to drive me around.

I could just say, “manage manage manage” or “positive positive positive” in the time honoured Tony Blair way, but that is over-simplifying a wildly complex matter.

Sending hugs (((((((((((((((((()))))))))))))))))))))))). Steve x

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Hi Christine, I too have only brain lesions, nothing showing on spine, but my mobility is terrible. Can barely walk…so I do question why your consultant said that. No idea how many lesions I have.

Hope you get some positive answers soon.

Pat xx

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Thanks Steve,

I think the best i can do at the moment is manage manage manage. I really dont know where any of this is going, after this neuro looked at my previous scans he said there were 2 clear lesions that looked inflammatory and there appeared to be multi spinal lesions through out the spine. Im not sure how clear they were as he has booked me in for another spine mri. I dont know what it all means and the way i feel at the moment i will have the mri and go for results and leave it there for now.

Can i ask you how your symptoms changed from the beginning to getting a diagnosis?

One thing i am learning is that everyone is different, neuros have different approaches but has i have read on here if its ms it will show eventually…maybe thats the best approach for now.

You could be right that neuros are guarded when it comes to giving a type of ms and yes benefits maybe one of the reasons.

Christine

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Hello, Christine.

At first, problems were erratic but after four years it was obvious the more I did, the more pronounced I became. I finally went to the doctor to address the specific symptoms after walking the dog and finding myself struggling to walk. Then it began to affect my swimming and hill walking.

By the time I was diagnosed, I couldn’t walk more than half a mile and driving in heavy traffic was a struggle. The rest has been a sliding slope getting steeper by the year. The skis are now off and I’m haring along on my Londonderry Air.

Best wishes. Steve. x

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Thanks Steve for sharing your story. Im always interested to what symptoms took people to the GP in the first place.I first went with fatigue which is constant and its only now 6 years later that i feel numbness in my legs.

Not sure which ways this is going to go, neuro mentioned ms or infection.

I will keep everyone updated.

Christine

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Hi Pat,

No i dont know why he said that lesions must be on my spine because of lower body problems. It makes you realise that we are all very vulnerable when seeing specialists, we believe what we are told at the time. Its only when we share information that we soon realise that things are not quite so simple as what we are told.

Thank goodness that we can share experiences on here.

Christine

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I know a lady with Transverse myelitis (sp?) - as far as I can tell it’s just as rotten as MS, it’s just there’s no brain lesions. I don’t know her too well but I know she has mobility & bladder issues, I think it’s pretty rotten, with a less well known name as MS!

Sonia x

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Hi Sonia,

Yes iv heard of that.There was a programme a while ago about a woman from Austrailia who had it and before they said what it was i thought the symptoms sounded alot like ms.

I just dont know what i have, some people seem to know before diagnosis that ms is very likely, i just dont know.

Seems that the neuro is thinking ms or infection thats all i know for sure.

Christine

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People who have had a stroke can have foot drop and strokes happen in the brain and not the spinal cord. Problems from lesions occur below the point of the lesion - ie a brain lesion can cause problems basically anywhere on the body. A lesion on the cervical cord will not cause face numbness. Our bodies adapt better to brain lesions as rewiring is more possible. The CNS in the spinal cord is narrow therefore plasticity to less effective. This is why a small spinal lesion can effect a person more than a large brain lesion.

Moyna x

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Hi Moyna,

Im certain that my spinal cord is involved and has been for a long time and annoyed that this was not picked up on in previous scans. Each time a read an article on ms i come away with a different view point. Some articles refer to spinal ms only yet the mcdonald criteria says that evidence of a brain lesion is needed.One article i was reading recently said that numbness with ppms is bilateral, i have never read that before.Or does it mean that over time both limbs will be affected.

My cousin has ppms and had no symptoms, he went from one day his legs giving way to not been able to walk the next day. But i dont think this is the norm, this was also one of the reasons that i did not think i had ms, my symptoms were and are alot more subtle.

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