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My 18 yr old daughter has just moved into limbo land - help please!

Hi,

I really need some advice or ideas please.
My 18yr old daughter had a CIS 4 years ago, and for 2 years had lots of neuro symptoms (pins and needles, stumbling, tremor, etc etc) but no one used the words MS, thankfully - she gets v anxious about health. At Birmingham Chn’s Hosp she was told that she’d had an nitial CIS followed by a relapse… For the last 2 years the neuro symptoms faded away, but she is left with overwhelming fatigue, pain in all her joints/muscles, and problems with word retrieval. She has been investigated in the last month by a rheumatologist, who doesn’t think it is lupus or anything rheumatological at all… She has had endless MRIs, and the latest shows new areas of demyelination in her spine. Her paediatric neurologist referred her urgently to a new specialist last December but the letter didn’t get written, and when we found thisout at last we were told she’d get an appt in Oct/Nov… but she feels so ill that I felt we couldn’t wait any longer. I took her last week to a private specialist instead. I emailed him beforehand to say that she didn’t know what diagnosis might be under consideration, so that he wouldn’t blurt out MS and freak her out… but he didn’t read it (or her notes, or her MRI findings…sigh…) He took a history, and said that the optic neuritis she had 2 yrs ago didn’t sound like ON to him (though it had been diagnosed in an Eye Hospital) and that as her VEP tests came back normal, AND as joint/muscle pain isn’t part of MS, AND as the areas of demyelination are small, he doesn’t think she has it, but that she has an 80% chance of developing it in the future.

So - new areas of demyelination sound to me like MS… am I right about that? I was also told by the eye hosp that VEP aren’t always 100% accurate as a way of diagnosing MS, particularly with a new and brief ON episode…

He didn’t know what to make of the joint pain at all… IS joint pain part of MS?

We are still in limbo, with the additional problem that my daughter is now so incredibly distressed as he has told her in effect that she will probably get MS in the future, plus she has something wrong with her now that is making life so difficult for her (the fatigue and the joint pain). I don’t know what to do or what to think. He wants to see her soon in his MS clinic (only because that is the fastest way to get to see him again, apparently - he did stress to her that’s the only reason, as he realised he’d said the wrong thing in mentioning MS at all…) but I don’t really have much confidence in him.

So - what should I do, and who should I try to get her to see who might help her?

Any suggestions gratefully received. Thank you!

V

Please note that I am not a neurologist or even a medic, but I am very confused by this private specialist’s behaviour and conclusions.

How can he dismiss new lesions because “the areas of demyelination are small”? Using the word demyelination automatically defines them as MS-related lesions, and therefore highly relevant irrespective of their size. Moreover, size is not an important factor in MS; location is.

You are right that VEPs are not 100% accurate. The other problem with them is that there is no baseline to the patient’s tests - there may have been changes, but there is no way of knowing on an individual basis because we don’t know what that eye might have done before the ON - it might perhaps have been high versus the normative data and ON has left it low normal. A confirmation from the eye hospital at the time, therefore and in my (unqualified) opinion, should outweigh the VEP results.

Joint pain is not normally considered part of MS, but as many of us on here can confirm, we sure do get it. Very often it’s because we are walking weirdly or lying awkwardly because of other symptoms, but it definitely does happen. Muscle pain definitely happens with MS, typically as a result of spasticity (tight muscles) and spasms. One thing though: both joint and muscle pain are symptoms of vitamin D deficiency and many MSers are deficient in vitamin D. Has your daughter had her vitamin D levels tested? If not, her GP can arrange it. And when you get the results back, ask for the actual numbers not just a low/normal result because the ideal level of vitamin D3 is 125-200 nmol/l which is much higher than the NHS currently stipulate. [Vitamin D is actually the sum of vitamins D2 and D3. D3 is the important one.]

I really think you need to challenge his decision; ask him exactly how her history and MRI results compare to the 2010 McDonald criteria and if, in his opinion she does not yet have MS, exactly what will change that. You can download the 2010 McDonald criteria paper for free if you google Polman et al (2011) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. ANN NEUROL 2011;69:292–302. I know this paper inside out and backwards and, from what you’ve said, I cannot see any way that your daughter does not meet these criteria.

The basic requirements for a diagnosis of MS are at least two relapses (she’s had that from what you’ve said) plus at least one lesion in two typical MS locations (unless all of her lesions are in her spine, she also will satisfy this because of her CIS diagnosis in the past). So to my eyes, your daughter has MS. Delaying a diagnosis does her no favours whatsoever. Early treatment is proven to delay the onset of disability, reduce relapse rates, slow progression and even increase life span. Getting a diagnosis of MS may be a temporary set back for her emotional state, but it is the best way to ensure that she gets the right help and support to manage her condition and to live as full a life as possible. And living a full life is 100% possible with MS. MS is NOT the end of the world. The sooner she confronts it, the sooner she’ll learn this.

Karen x

Ditto to everything Karen has said.

No wonder your daughter is anxious about health - it’s because she knows something is wrong! I’m really not sure what he thought the point of saying “she’s 80% likely to have MS in the future but doesn’t have it yet” was.

Thinking of you both!

Debx

Hi Anon,

Sorry to hear about what’s been happening with you daughter. I have just come out of limbo myself, which started with CIS and ON too- very similar to your daughter, as a lot of us are. It wasn’t easy and I’m not an 18 year old teenager!

I completely agree with everything Karen has said. As ever she is spot on and brilliant.

I live near Stourbridge just south of Brum- so not far away from what I gather about your post. If you or your daughter wants to talk, email, text or even meet up I’d be happy to help.

Alternately ask your daughter to come on here herself, there is a wealth of safe factual information and the emotional support offered by the members is a godsend and very good at helping you cope.

There is life with MS! It is not the end of the world, although it does seem it at the begining.

Sarah xxx

I cannot and would not argue with any point’s rizzo makes; she’s better than any Neurologist; she’s a doctor with MS.

This will give you some idea of the diagnostic criteria and what some test names mean; http://www.mult-sclerosis.org/diagnosingms.html written by another doctor.

I understand a little why your Neurologist is being careful as there are so many complaints that cause lesions from Charcot; Marie; Tooth disease (nothing to do with your teeth) http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm#173483092 to Hughes syndrome http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736

Neurology is a hit or miss complaint but surely your daughter has enough history to warrant a very educated guess. I don’t know what neck of the woods you’re from but your going private was a good idea to speed things up. May I suggest you put a message on Everyday Living to see if someone in your area can recommend a Neurologist?

Another £200 I know but it is essential you get that proactive Neurologist to get her on some treatment now.

George

(Grrrr - just posted a reply, and somehow lost it!)

But - I wanted to thank you for your responses. Karen, I wish you were a neurologist because you know so much more than the consultant we saw! He said he doesn’t believe in the MacDonald criteria as evidence shows they are often wrong… so I don’t know how to have much faith in him, really. Not quite sure what to do next - go back to him, or wait for an NHS appt which will take another 3 months… Not easy, being in limbo. My poor daughter is beside herself. I will follow the links, and become better informed (while wishing it could turn out that she has Hughes Syndrome - that one sounds a whole lot better to have!)

No, we’re not in Birmingham but in Somerset - we went to B/ham because they had a paediatric demyelination dept there. But the offer to talk to/email my daughter is a kind one, and something she will need once the bombshell effect has settled a bit.

Thank you all - what a supportive group!

Best

V