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Is it really good enough ?

Ive recieved the letter from my neurologist (the one thas sent to your doc).It says he is getting a second opinion from a neurosurgeon regarding my slipped disc .Even though i have just been to see one last week and he said its not whats causing my problems !

It says the mri i will be having in 3 months will be of the neck to check the disc .Not anywhere else .

It also says about my new med pregabalin as a form of pain control.

When i saw him on monday he said as the mri shows no lesions its not ms, and he doesnt know whats the matter with me .Is that really good enough? should i not have any more tests ?

My symptoms are getting me down now .Im also on unpaid leave from work.

I cant even move my eyes upwards without getting double vision now .

Ive woke up in one of those moods today i think :(

I feel like ringing the neuros secretary and getting him to ring me .

I think as i told him about my bladder and eye problems since 15 years ago ,he thought that whatever i have should show up on  the scan if ive had it that long .

But my dad even suffers from a weak bladder and ive always had eye problems .My numbness ,tingling,vibrating feelings have only come on about april time .Would a scan of showed lesions that quick ?

Sorry for moaning and about all the questions its just i dont want to worry or stress my partner out anymore .

Sam x

On the upside, he’s being very honest with you and he’s neither fobbing you off with a “functional” diagnosis or giving you a diagnosis that may turn out to be wrong. If you think of it like that, he’s doing the right things.

It seems that he doesn’t know what’s wrong, but he’s mentally ruled out MS - so there is no point having another brain scan as far as he’s concerned. I would imagine that he has more reasons than just the MRI for this mind you, because MRI is not perfect and can miss things - he should know this.

Whether or not the MRI would have shown a new lesion depends on lots of factors. As far as time goes, I believe that most lesions are visible within 6 weeks of symptoms starting. Before that it can be helpful to use contrast when scanning. If yours was before this then I would think you have a good argument for asking for a brain scan as well as a neck scan.

You can always ask for a second opinion, but there are no guarantees that another neuro will do any better :frowning: If I were you, I think I’d give this guy a while to try and work things out. If he gets nowhere, then time to see someone new.

Hang in there!

Karen x

Hi

I have been in limbo for a long time. And, I have seen multiple neurologists. So, I think I can understand your frustration after 13 years!

I would rather a consultant be honest and tell me that they are not sure what is wrong with me. That actually didn't happen early on in limbo as I subsequently found out from a good GP and consultant who told us that my previous diagnoses did not fit my symptoms or clinical presentation.

Thank goodness the good ones cared enough to take the time to sort through the rubbish (for lack of a better word) that was put in my notes by those consultants I saw early on that found it easier to faff me off than to investigate. That has not helped me at all, imo.

Your consultant does not seem to be fobbing you off. Now, I am not at all defending neuros ;) but I can understand after all these years that it is entirely possible that consultants may not know what is wrong because there are so many similarities between the hundred's of known neurological conditions as well as neurological mimics. 

Also, not one of us presents exactly the same clinically.

I know its difficult but I hope you can get the best from a neurologist who seems to be listening and, most importantly, acting.

Take care

Tu

 

Thankyou both for your answers :slight_smile:
I do really appreciate him being honest with me . I think what’s puzzling me is why he is not doing any more tests ? All I have had is an MRI . I think im just very frustrated as the symptoms are taking over my life at the monent .

Today I seem to of lost my sense of smell , and my nose feels freezing. It it’s actually not . I jeep walking into things and just feel exhausted .

So when he says he doesn’t k Now I just think to myself that he should refer me to someone else then . Surely u can’t be the only one he has ever seen these symptoms .
I m thinking a private consultation with a neuro For a second opinion might be the way to go. ?
Sam x

Hi

For what its worth I found going private didn't help me with limbo at all, obviously lol, and it was very very expensive. Also, the length of the consultation privately vs the time with NHS consultants was negligible so if you are thinking of going private for more time, I wouldn't based on my experiences.

I will stick with the NHS.

Good luck whatever you decide.

Tu

 

Hi Karen I am unclear about this question having read the abstracts only of these papers as they seem to suggest that a significantly higher number of positive MRIs would occur if contrast, and higher dose contrast and delayed MRIs were used routinely beyond this initial period. I would be interested to know your interpretation on these. Bob

http://www.ncbi.nlm.nih.gov/pubmed/8530944

http://www.ncbi.nlm.nih.gov/pubmed/8614498

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486365/

Hi Sam,

From what you've said I think sticking with your current neuro is the way to go. He may not know what's causing your symptoms but he's being upfront about it and the fact that he's consulting a neurosurgeon for a second opinion regarding your slipped disc shows he's being proactive, keeping an open mind and perhaps more importantly he isn't giving up.   

The option of seeing another neuro (for a second opinion) will always be there but it will probably also mean starting from scratch again too.   

Obviously you have to go with whatever decision you think is right but I think I'd be inclined to see what your current neuro comes up with first.

Debbie xx 

 

 

 

Hi Bob.

I’ve had a quick read of these - thanks for the links. A couple of immediate thoughts about them. First, these studies used people who are already diagnosed and who have multiple existing lesions. From what I can determine, the idea is that this technique might be helpful in monitoring the effect of drugs etc in trials rather for diagnosis. Second, they are quite old - scanning has improved dramatically even in the past 5-10 years to the point where there are emerging techniques to detect gaps in the blood-brain barrier that require no gadolinium at all. This means that researchers have better techniques these days to monitor MS activity. However, the point you make is that the existing NHS way of using gadolinium may miss things? I completely agree. I would say, however, that it was probably more important to use decent settings and decent scanners than to use high dose gadolinium and delayed scanning because thick slices can hide small lesions regardless of what other techniques are used. Neuros are not terribly interested though - the vast majority of people with MS present with visible lesions with the current protocols so, if someone hasn’t got visible lesions, the chances of them having MS are very small. They also don’t care about how many lesions patients have: none = no MS; two in the right places = MS; but any number more than two in the right places also = MS. That’s why a lot of neuros don’t bother rescanning patients once they’re diagnosed - they’re just not interested; symptoms are much more important. (Rescanning is often only done when there is a question about DMDs or within a clinical trial.)

Coming back to the six weeks thing. From memory, that’s the most common claim for how long the existing protocol is useful (I could be wrong here - I’m relying on a far from perfect memory!). So, unless the NHS changes its protocol, contrast MRI is only useful for about six weeks after the start of symptoms. Even then, it is only as good as the slice thickness and scanner strength.

The McDonald panel has already reduced the no. of lesions required for diagnosis from ~9 to 2. Reducing it further to 2 seen with advanced scanning techniques would very likely increase the percentage of wrong diagnoses. Once we have scanners with axonal-level resolution, then all of this will be moot, but for now there has to be a balance - which unfortunately means that some people will have to wait longer for a diagnosis.

Kx

Very interesting reading the above links :) thankyou for posting them up .

But if he doesnt know what it is i feel he should do more tests .I think if i wasnt feeling so bad i would just take the tablets and shut up lol .

I spoke to his secretary earlier and she said to ring him tuesday as hes in his office then .Im going to get my doctor to ring .Do you think i should ask my doctor about a visual evoked potential ? maybe that would give more answers ,not the whole answer but it might help.

When i  had my mri i had the brain done and neck .Then i was very sick etc managed to get back on and she said she would do it shorter ( the back ) as i was so ill .She did half way down then i had to get off as i was ill again.

Do you think there would be any need to do the back again ?

I suppose when someone says they dont know whats wrong with you i just thought they would do more tests

Sam x

 

Thanks for that Karen, very helpful. Sorry to jump in on your post Sam