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angeltess

Neuro letter

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angeltess

I've just received a copy of a letter from the Neuro to my GP, in which she outlines the initial appointment I had with her, the tests she's ordered (which I've now had) and a description of my symptoms.

 

A few things stood out. The first being that the Neuro states that if the MRI shows evidence of demyelination she would arrange a lumbar puncture; I was informed that that would not be necessary. I suppose this would only go ahead if it wasn't absolutely conclusively MS. If the scan is normal she will then arrange EMG nerve conduction tests to check for peripheral damage.

 

The neurological findings appear to be quite normal from what I can gather, apart from my left pupil being larger and sluggish in response to light, a tremor in my left outstretched hand and she states that abdominal cutaneous reflexes were absent. I've had a look on the internet to see what that signifies, but I'm a bit baffled by it. I know when she was pricking my stomach and apologizing that it wouldn't be pleasant, I couldn't feel a thing. Is it therefore abnormal to have these reflexes absent, or not?

 

So, I'm now just waiting to see what the scan and VEPs showed, so I can know what happens next. It'll either be lumbar puncture, EMGs or a diagnosis. I'm spinning a big 3 sided metaphorical coin now - wonder which way it lands!!

 

 


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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derby42

Oh jan what a time for you. . I guess all you can do is wait for results from your scan. It sounds like plans are in place depending on that but what an ordeal for you. It sounds very confusing to me but at least something is happening and you know youll get answers soon. Take heart if you can and remember you have friends here.


derby x

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xxmariannexx

Oh Jan it must be so frustrating to feel so close but still unable to know exactly what is going on, I really hope you get some asnwers soon. Try not to worry and take some time for yourself.

 

Marianne x

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Sleepy
Scully

Hello Jan.

 

These letters are sometimes like they have been written in a different language altogether !

 

The abdominal reflex that I think she's talking about is similar to a lot of neurological tests they carry out.

 

The stroking of the bottom of the feet, will give either a positive, negative or no reaction at all. ( Babinski sign or plantar reflex)

 

When they tap your elbows and forearms and knees with the rubber hammer thing, they can tell if these reflexes are normal, or fast, or slow etc.

 

So, the stroking or pin pricking on your tummy is another neurological test that will give some response, or no response, such as yours.

 

The Neuro's do a lot of poking and prodding to seek what responses they get and will note down anything that dosen't seem to be responding as they expect it to.

 

I can understand you are in a spin over all this. Hopefully, the Neuro will soon have all the results she needs and will then discuss it with you.

 

Hang in there Jan.

 

With luck it won't be long till you hear something, one way or another.

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Christina

If the MRI comes back showing demyelination I am not sure why there would be need for LP, Jan. It would be clear cut it's MS, but some neuros still like to do them. However it is entirely your choice, I declined but lots of people have them done with very few problems.

 

The sooner you get these test results back the better :flowerface:

 

Poking your tummy with a pin is checking for loss of sensation.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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angeltess

You're all so right - it's a very confusing time. I just thought I'd get a letter saying yes it is or no it's not!! Or at least, an appt to that effect. The Neuro even said at the appt that a lumbar puncture wouldn't be necessary, so why she said she would order one if demyelination was suspected on the GPs letter I've no idea.

 

So, it appears I have loss of sensation on my tummy. I read something on the internet this afternoon which said that 2/3 of MS sufferers have absent abdominal reflexes. But, I still don't really know, do I?? I just wish they'd get their finger out and get on with whatever needs to be done next really.

 

You're so right about the letter looking like a foreign language - I know it's from one medic to another, but you'd think they could do a translated version for us plebs haha.

 

I suppose all I can do is wait now. But I will be ringing the Neuro's secretary next week if I don't hear anything.

 

Thanks again everyone - you're the tops!!!!!!

 

I'm going out tonight to visit friends with my family - so nervous, but at least I'm doing something 'normal'. I'll let you know how it goes tomorrow. Jan. xx.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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mackers758

Oh Jan, you must be more confused than before. Fingers crossed that you actually get the diagnosis at the appointment.

I hope you are enjoying your night with some friends, I hope you've let your hair down. More importantly I hope you've let your guard down and being yourself. We are all the same, we pretend to our friends and loved ones that we are fine. True friends will be there to support you.

 

Steve xx

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LynnWilliams

Jan.

I understand what you mean by the letter, a simple yes you have it or no you dont have it would be so much easier for our brains...lol but nooo they have to make it complicated, sounds like my letter was similar to your and my doctor explained it to me saying yes i have ms.

 

Now because I have had blood tests coming back high I now have to have a LP, as they think I could have another underlying problem (great). Hope not

 

It would be nice if they could just keep it simple eh!! Make it less hassle for us

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Guest zelinda

If the MRI comes back showing demyelination I am not sure why there would be need for LP, Jan. It would be clear cut it's MS, but some neuros still like to do them. However it is entirely your choice, I declined but lots of people have them done with very few problems.

 

The sooner you get these test results back the better :flowerface:

 

Poking your tummy with a pin is checking for loss of sensation.

 

Chris x

 

 

Hi Chris, the problem is there are more diseases then just MS which presents with demyelination lesions.

 

Demyelinating diseases of the central nervous system include:

 

Demyelinating diseases of the peripheral nervous system include:

 

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angeltess

Thanks Zelinda, maybe that's why she's thinking of the LP then. I just don't know why she told me it wouldn't be necessary. Oh well, I'll just wait and see what happens.

 

I hope everything goes ok for you, Lynn. You could certainly do without any further complications. I'll be keeping my fingers crossed for you.

 

Thanks Steve, I had quite a good time last night. I told a couple of friends a bit about what's going on, but surprised myself that I was quite matter of fact about it and didn't get emotional at all. The effort of being out all night until late, having to socialize and trying to appear my usual self in front of them all has played havoc with me though. I've hardly slept, my cold's flared up big time again, my legs throbbed and ached all night and my ear just buzzed and gurgled all night - so I'm shattered today. And no, I don't have a hangover haha. I resorted to cola and cups of tea when they were all drinking.

 

Jan. xx.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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Christina

Thanks Zelinda.

 

In fact MRI alone can diagnose MS in more than 90% of people, which is why LP is used much much less than it was, but you're right there are other conditions that may present with similar symptoms. In MS I understand it is more about where the lesions are clustered on the scan that distinguishes it, because 'lesion' is an area of damage or inflammation which could be caused by a number of conditions.

 

I used to work as a neurology nurse some years ago, and LP was used a lot then, but scanners are so much more advanced and accurate these days that Neurologists can diagnose without the need for LP unless the scan is inconclusive but they still suspect MS.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Sluggish
Marina

The McDonald Criteria for diagnosing MS was revised in 2010 in order to simplify diagnosis: http://www.mstrust.org.uk/atoz/mcdonald.jsp It no longer requires as many lesions as before and no longer requires an LP except in the case of there only being one lesion or if PPMS is suspected. However, some neuros still seem to want to perform an LP, which is (in my mind) needless.

 

When I finally got my DX, based on MRIs only (and obviously symptoms and long history), my neuro asked if he could do an LP - after he DX'd me. He explained it wasn't for diagnosis per se but was for if I chose to have the DMDs. He's an MS research neuro, and said they need do LPs on people who have the DMDs so that they can know how things evolve in 10 years' time. Read into that what you will. He also went out of his way to say that I didn't have to have an LP, but that if I wanted the DMDs he would want one. I said "no thanks" as I didn't want either an LP or the DMDs. I also what must've been the world's largest blood test to rule out other conditions.

 

Lesions can also appear naturally with age and with no other cause other than age. One's apparently allowed one lesion per full decade of one's life, which in theory means that a 17-yr old could have one lesion and someone's who's 54 could have 5 lesions. However, lesions in MS have to be consistent with MS (as Chris mentioned). There are some links here http://ms-people.com/forum/topic/4290-description-of-lesions-in- mri/ which describe lesions in MS.

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Marina

(belated DX in June '05, SPMS)

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kizzy

Chris you are spot on i was diagnosed with 1 MRI alone and symptoms . Jan i hope you get a clear answer soon hun XXx :hearts_circle:

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Sleepy
Scully

Hello Jan,

 

So pleased to hear that you had a good evening out with your friends, and found it easier than you thought to discuss how you were feeling.

 

We shall all be keeping our fingers crossed for you, that you hear from your lovely Neuro very soon, and you will then know exactly what's what.

 

I had all the tests imaginable too. But after MRI's and VEP's and then a lumbar puncture (I didn't know I could refuse that) so many blood tests the little form they give with the tests required written on, went on to three pages, armfuls of the stuff they took?

 

My Neuro told me later, after the tests and the diagnosis, that he was pretty certain it was MS as soon as he saw the scan anyways!

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Guest zelinda

Thanks Zelinda.

 

In fact MRI alone can diagnose MS in more than 90% of people, which is why LP is used much much less than it was, but you're right there are other conditions that may present with similar symptoms. In MS I understand it is more about where the lesions are clustered on the scan that distinguishes it, because 'lesion' is an area of damage or inflammation which could be caused by a number of conditions.

 

I used to work as a neurology nurse some years ago, and LP was used a lot then, but scanners are so much more advanced and accurate these days that Neurologists can diagnose without the need for LP unless the scan is inconclusive but they still suspect MS.

 

Chris x

 

Hi Chris, oh yes sorry one can be diagnosed with just the MRI, but from what I read about Angels letter she said her neuro exam was normal, so I am just assuming that if this is the case even with an MRI showing lesions, perhaps the neuro would want more back up to a diagnoses. If that makes sense. Usually I would have thought with one MRI if there is a diagnosis, there is real positive signs with reflexes and clinical history as would be dictated by the MacDonald criteria.

 

Its a blooming minefield. I have no idea how they diagnose this disease lol some seem to get diagnosed with very little proof, and others even with 98% proof remain in limbo land like myself.

 

Your job must have been very interesting working with a neurologist. I miss my job sooooooooo much. xxx Zelhearts_circle.gif

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happyandy

My understanding of the mcdonald criteria is that you need to exhibit two distinct demylinisation events (when the mri is the testing criteria) separated over time to meet a dx of ms. If the first mri comes back with lesions consistent with ms then you are dx'd with clinically isolated syndrome then a minimum of three months must pass before they do a second MRI and there needs to be new lesions for a positive ms dx.

 

Andy

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If I knew I was going to live so long I would have taken better care of my body

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Scully

Yes Andy,

 

In the main, I think that is the case. Although there are one or two variations.

 

One being ' Two or more attacks, with objective clinical evidence of two or more lesions.

 

The other, I think is if Primary Progressive MS is suspected.

 

The official quote is as follows

The McDonald criteria use MRI evidence extensively to confirm an MS diagnosis, together with lumbar puncture evidence in some instances. They allow for an MS diagnosis to be made on the basis of one relapse, given the right MRI evidence.

 

The criteria specify that an attack or relapse must last for at least 24 hours, must be a neurological disturbance typical of MS, and that there must be at least 30 days between the onset of the first attacks and any subsequent attack - whether seen clinically or just on MRI - to count as two separate MS events.

 

 

Scully


Edited by Scully
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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Christina

Yep, that's right Lori. They McDonald criteria was revised recently as it was decided that the sooner treatments could be considered and started the better.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Christina

Hi Chris, oh yes sorry one can be diagnosed with just the MRI, but from what I read about Angels letter she said her neuro exam was normal,

 

Hi Zel

 

I think Jan said she is assuming her reflex tests are normal, but it appears from the letter there were one or two that didn't behave normally.

 

I do miss my job. What did you used to do? :flowerface:

 

Chris


Not waiting for the storm to pass, but learning to dance in the rain ....

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angeltess

Hi and thanks to everyone - it's like a bit of a minefield to me if I'm honest. I kind of understand the criteria, but it's still quite complicated.

 

You're right, Chris. The terminology of the letter was a bit difficult, but from what I can gather the neurological exam was pretty normal apart from the 3 things I mentioned; my pupil dilation, hand tremor and abdominal reflexes absent. It also mentioned lower limb weakness, yet my MRC grade was 5, which I think is normal - so the weakness mustn't have been significant.

 

She mentions in the letter that I have a longstanding history of neurological disturbance and lists most of my 'episodes' and symptoms, though not all of them. I suppose she knows what is significant and what's not.

 

I didn't mention earlier that I have decreased sensation in left face, left upper and lower limbs.

Romberg test negative; down going plantar responses; no evidence of pathological reflexes; visual fields full to confrontation - I'm taking it these are all normal??? It is like a foreign language haha.

 

Jan. xx.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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kizzy

If you ask me the diagnosis process is just soooo confusing and I think it all depends on your neuro. When I said I got diagnosed on 1 mri only, I guess that is not strictly true when my neuro looked back through my medical history I had been having relapses for 3 or 4 years but just did not know what they where at the time. I am sure you should get some answers very soon now Jan , Hang in there hun :0)

 

Hugs Tracy Xx :hearts_circle:

 

 

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Guest zelinda

Hi Zel

 

I think Jan said she is assuming her reflex tests are normal, but it appears from the letter there were one or two that didn't behave normally.

 

I do miss my job. What did you used to do? :flowerface:

 

Chris

 

Hi Chris I taught I.T. in Further Education leading to recognized qualifications, like ECDL, CLAIT, IBT2 and RSA stuff. Then I ran 11 learning centres owned by a local college I had to basically put in all the accreditation, deal with teachers, employ them and stuff, but I still taught I.T. and cookery to people who had learning difficulties and problems with drug and alchohol. OMG I loved my job I still talk to some of my students. The eldest was 93 lol....he wanted to learn about the Internet he said before he popped his clogs lol. I would do anything to feel well enough again to work...makes me so sad and depressed. Zelx

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Christina

Wow, I can see why you feel you miss your job Zel! :flowerface:

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Sluggish
Marina

For anyone who's interested in reading the full McDonald's Criteria with all its med speak, they can be found here: http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

 

Like Kizzy said, it's down to your neuro. Neuros seem to vary enormously in their outlook and how they deal with possible MS patients. I had to go through 5 before I found one who paid (full) attention to me, despite my having one (inconclusive) MRI showing lesions of demyelination and a very long history and symptoms... It's also preferable if the neuro specialises in MS.

 

Even so, be prepared for the possibility of being told you might have to wait another 3-6 months to have a 2nd MRI.

 

Good luck, Jan, I know how much we're all hoping you find an answer to your symptoms, so you may be taken out of the nightmare of being in the land of the unknown :hearts:


Marina

(belated DX in June '05, SPMS)

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Christina

Romberg test negative; down going plantar responses; no evidence of pathological reflexes; visual fields full to confrontation - I'm taking it these are all normal??? It is like a foreign language haha.

 

Jan. xx.

Hi Jan

 

Yes, they all sound normal from what I can remember :flowerface:

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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