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Frustraton

Hi everyone,

Sorry if this is long.  I have been under investigation for MS since august last year.  I had a brain scan last august which showed ? increased signal to left optic nerve. It was found that I have a spinal syrinx at T4-T9 but my neurologist has sai this is incidental and will not be causing my symptoms. I also had a VEP which is normal. I have also had all the usual blood tests for mimics. I had an episode of bilateral vision loss 10 years ago which may or may not be related.  I had a dizzy spell, fatigue and sore weaker legs last feb.  An episode of lightheadedness, dizzy and fatigue in october and then december numbness and pins and needles in my hands my tongue and lips were tingley and fizzy drinks tasted flat and hot didnt seem hot and my legs would feel like they were going to give way and also terrible balance, intermittent double vision. The GP thought I had a nystagmus and said my Romberg was hopeless.  I have also had some other sensory symptoms like buzzing and banding around my rib cage.  The heat makes me feel terrible and makes my toe tingle.  Anyway I saw the neurologist when I was like that in december and he has written to my GP saying he thought he may not find an organic cause but would keep an open mind asI am genuine about my symptoms.  He also wrote that I reported being off balance, that I appeared to have a tremor (i did) but that i was anxious, had palpitations (i didnt). I have improved alot since december/january and can now walk without a stick again and a reasonable distance, my head is generally clear.  I am left feeling a little weaker than I should and bladder difficulties and some cognitive issues and the sensory symptoms still come and go but much better overall. 

I have had another mri but with enhancement last week and I am due to see him again on monday. I am scared he is going to jut dismiss me.   I have had to have a change of job as I am no longer fit to work in the role I was in.  He suggested that I see an optician for thevisual disturbances who said my left eye is weaker now than it was at the last examination (9months prior) other than that he told me to google my symptoms!!    I have seen a physio who is reluctant to do anything much but did give me some exercises for balance and to strengthen my legs.  The physio did my reflexs several times over so I am inclined to think they may have been brisk as the GP had commented that they were brisk but he would put that down to me being a busy mum.

 I am wondering if anyone has suggestions who to get him to refer me to next or what else I should look at.  I feel the consultant is quite dismissive, he wont answer my questions. He is a MS specialist.  Everyone has told me it is highly suggestive of MS including GP, an ex MS nurse and even the consultant when I first saw him.  I dont want MS but had got my head round it. I took a list of symptoms the last 2 times but not sureif that is wise or not.  Sorry if this is all in a jumble.  Just dont want to be dismissed, I have 3 children 5 and under and it was so hard to manage this latest episode, no diagnosis seems to mean no support.

Katie

Hi Katie, i too am un dx but have had various probs since last August. Don't really have anything useful to say apart from although you don't have a dx your symptoms are very real and you should push for any help you need. Just because they haven't said MS should not make any difference to the support you should be able to get. I'm sure others on here will be able to have more input but until they do ((hugs)) and keep your chin up!

Take care sonia x

Re a list, I reckon that this is a great summary of your symptoms: it’s concise and grouped around distinct periods of activity. I really don’t think you need more than this except maybe stress any ongoing symptoms that are particularly bad.

I honestly don’t know what to suggest as we don’t know what that MRI has shown up. If he does want to discharge you, try and push for some idea about where to go from here. Ask him, given my symptoms and results to date, what are the possibilities? / if he was you, where would he go next? Etc. Keep trying a different angle (politely, but firmly) if he sidesteps the question. Hopefully it won’t come to that anyway.

Really have no idea what you being a busy mum has to do with brisk reflexes btw?!

Good luck! Let us know how it goes?

Karen x

have you been in touch with ANN CONROY TRUST they deal with syrinx, they recommended I see a neuro surgoen

Hi

The neuro I was seeing was about to sign me off because he couldn't get to the bottom of what was causing my Symptoms. He had originally thought they where organic but whe the tests all came beack within normal range fe thought it was functional he sent me to see a neuro psyhcologist who said that I this had no mental trigger and he should be looking for a organic cause. So at this point he didn't know what to do and NFA me. I asked him where do I go from here ( he had refused to prescribe me any drugs for my pain). 

He reffered me to a general Medical consultant. This GM consultant has treated my symptoms and reffered me to specialists when needed. He keeps an over view of everything and I see him every 4 to 12 weeks depending on how things are going. He does not jugde in anyway and is utterly brillant . Although I still have no Dx (which is very frustrating) I am looked after well. He has arranged a different neuro to see me as this one specaility is movement disorders and although he too is unable to Dx me he is helping me walk easier with botox injections in my foot and leg.

Who knows one day may be i will find out.

Twist

Hi,

Thanks for the replies. Lally, I am seeing a neurosurgeon next month at Addenbrookes so will hopefully get some clarification about the syrinx then.  I saw him today and my mri was essentially normal but showed an area of increased signal which he said is not a typical area.  This was not on the scan from august.  He also could not say was not due to MS.  He reccommended I have a lumbar puncture if I have another episode. His parting words were tha he told me it was highly suggesive of inflammatory disease when I first saw him. He will see me again in 6 months.  One question I thought of after was that I was supposed to have the scan back in december but the scanning department mucked me around would this have been likely to have shown more up?  I am really not keen on the lumbar puncture idea for several reasons and wondered whether I would be best to save up incase I have another episode for a 3T contrast scan at the time of an episode?  I feel like he is taking me seriously again but will wait and see what he puts in the GP letter as that seems to be the complete opposite to what he says to me usually.

Katie

Having had time to think about this I am now wondering if I should be pushing more for a firm diagnosis?  Would I be eligible for DMDs?  I was unable to work for most of last year and have had to change roles.  There are many things I dont do now which I did before so they have definately been disabling.  I am only 30 and I am really struggling with this whole having to tick the correct box thing for diagnosis.  I had a lesion shown on optic nerve probably ast aug and now this one. Clinically I have shown relapses with some recovery.   I think I have had all mimics ruled out so do not understand why they cant diagnose me. I really dont want to wait another 6 months. I have a lot of other stress at the moment and this is just not helping. I am really struggling with the uncertaintiy and feel it gives me false hope.  Unfortunately I just didnt think of the questions on monday at the appointment.  Limboland sucks.

Katie

Eligibility for DMDs relies on you having at least two "clinically significant" relapses in two years. Some PCTs exclude sensory relapses from that, but even if you tick that box they are not going to give you them unless you get that diagnosis (but see later please).

 

The problem the neuro has is that this new lesion isn't in a typical place: to give a diagnosis, the patient has to have at least one lesion in at least two typical places for MS lesions. There will be some neuros who would diagnose you based on your symptoms and clinical exam results despite the MRI, but they are not all that common and I'm not convinced that they wouldn't want an LP first.

 

The basic fact is that, if you had a positive LP, the neuro would be far more likely to diagnose. LPs really aren't as bad as most people think - if you have a look through the comments on here you can see that. So maybe you should reconsider?

 

The other option is to ask for a second opinion from an MS specialist (does your neuro specialise in MS?). It may not get you any further, but at least you will have done everything you can. Unless...

 

If you have been diagnosed with "probable MS" or CIS, you could fight to get the DMDs that have been approved for them by the EU (I think Copaxone and Rebif; not sure about the others). I am almost certain that your PCT won't want to allow it, but you could challenge them in court. This is something that I really don't know much about, but maybe someone in the MSS could advise you?

 

One thing you need to remember: DMDs are not a cure. The injectable DMDs reduce the number of relapses we have by 30% on average, they reduce the severity of the ones we still have and they can delay the onset of disability. Some people get better results than that, but there are no guarantees.

 

Karen x

Thanks Karen.  I can kind of understand the neuros predicament. It just seems like my mri is being treated not me.  Do you think it is worth me trying to get the 3T scan now?  Also should I be worried about the increase signal then.  If they cant diagnose MS should I be making sure it isn't something else?

Katie

Sorry another couple of questions and don't know where else to turn.  

Is it unreasonable to expect some support from somebody like the MS nurse at this point? I am actually a staff nurse in the hospital so wondered whether to contact them myself.  I have tried to contact the secretary to find out exactly where the lesion was and whether it enhanced or not but she is off sick again   Also in answer to question above the neurologist is a MS specialist and he didn't offer the LP for now but for when another relapse happens and I didnt tell him I wouldnt have one.  As I have had several relapses now I find this a bit odd. 

I seem to have lost my sense of positivity and get up and go I feel I need some sort of plan in my mind as to how i'm going forward.  I have managed to get an appointment for physio today so thats a start.

Katie

You summed up a major problem with modern neurology perfectly there: treating the MRI and not the patient. All too many neuros are like that from the sounds of things :-(  Which is a big problem when MRI is far from perfect!

 

3T scanners are definitely better than 1.5T scanners, but how they are used is the key thing. Imagine a 1.5T scanner is a standard family car with a top speed of 100mph and a 3T scanner is a sports car with a top speed of 200mph. Put them both on a main road with a speed limit of 30mph and the sports car will be a bit faster, but not massively. Now put them both on a motorway in Germany (with no speed limits) and the sports car will get to the destination ages before the other car. So, it's not the car alone that makes the difference - it's also the settings. So, should you try and get a 3T scan? I do know that people get diagnosed with 3T scans who have not been diagnosed with 1.5T scans, but that is more likely if the scanner is used with good settings and, of course, there is something to find. So, if you go for a 3T scan, make sure you get your money's worth (= a good selection of different scan types and orientations with 3mm slices max) and be prepared for it to not show anything new.

 

Should you be worried about that new hyperintensity (is that what you meant?)? It is not normal for people to develop hyperintensities along with neurological symptoms so I do think that it should be taken seriously. I don't know about worry though - I think the neuro would have been more concerned if it was something that required urgent intervention?

 

How about contacting your neuro and just asking him about the 3T scan (and about an LP, if you feel prepared to have one now)? Some neuros are a bit particular about only considering scans done at their hospital so definitely best to check that out, but also what would he do if a 3T scan showed more lesions? You could also ask him what else it might be if it isn't MS.

 

Can you use contacts / friends of friends to contact the MS nurse and maybe ask for a chat over coffee sometime? Not sure how "correct" that is??

 

You can actually get a copy of your scan from the MRI unit. They might charge you something for it (my local hospital charges £18.50), but then you can actually look and see yourself where the lesions are.

 

Well done with the physio appointment - progress! Yay! I hope it helps loads :-)

Karen x