Anonymous 05/12/17
Last reply 6 months ago
Mri results

After seeing Neuro at last appointment and telling him about new symptoms one being arm falling asleep and hand shock like pain couple of months ago he arranged another mri of brain and neck
No new lesions on brain scan no lesions enhancing. one lesion seen on c4 not enhancing.
He said as he can’t date spinal lesion he still can’t diagnose. It’s my first mri that included spine. So I’m guessing new symptoms just go down to being caused by lesions already there as don’t know when spinal one appeared or if it’s connected to new symptoms. Very confusing but at least nothing active. Back to limboland i guess x

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stumbler
6 months ago

@roxy12 , it’s good news about the scan result, but not so good news about the lack of a diagnosis.

That’s the thing with MS, we have to take the rough with the smooth.

Stay well.


Anonymous
6 months ago

Thanks Stumbler diagnosis of CIS it shall remain and hopefully no big relapse to definate diagnosis


stumbler
6 months ago

@roxy12 , current thinking is to treat CIS to try and avoid it progressing to a diagnosis of MS. There’s been some recent posts on that.


stumbler
6 months ago

@roxy12 , you may want to have a read through this post:-

Is CIS a type of MS?


Anonymous
6 months ago

Thankyou @stumbler. My Neuro doesnt seem to think treating early is a good option. He asked what would we be treating when there’s nothing active going on? Its difficult to know what to do buy he’s never offered. Has referred me to physio and urologist so dealing with fluctuating symptoms I guess.


stumbler
6 months ago

@roxy12 , it’s a shame when Neuros are short-sighted.

“What would you be treating?” Well, MS treatment’s role is to try and prevent the frequency and severity of future damage, they don’t treat existing damage. So, the answer to the question is exactly the same, preventing future damage.

Prevention is better than a cure – there’s a novel approach! 😉


Anonymous
6 months ago

@stumbler I wish I had that answer on the tip of my tongue when answering. I shall learn it for next appointment he is arranging. Thankyou


hmcampos
6 months ago

First of all congratulations @roxy12. Despite what you feel (much like I do as well…) no lesions are always good news. Had a talk with my neuro about exactly the same as you, his answer was quite similar. No lesions, no evidence. Old relapses showing themselves from time to time is probably the reason why.

As for your neuro saying “treating early” is not a good option, I beg to disagree…strongly. My first neuro was not specialized in MS and had the exact same opinion “treatment can wait, lesion is not active”. Then another relapse came almost a month after the one that triggered the diagnosis. One may argue this relapse would have happen anyways but I studies clearly show that the sooner you start the DMT the fewer the lesions and the lower the probability of disability.

Just my opinion though 🙂

Be strong!
H


Anonymous
6 months ago

@hmcampos thankyou gor your reply . Its probably a discussion I shall try again at next appointment all be it may be a year away no doubt! I have read a lot about cis as precursor to ms and feel I am indeed high-risk. I had over 20 lesions on first mri After optic neuritus with leg weakness and forgetting words with usual sensory issues. I had positive lumbur puncture and a previous trigeimal neuralgia 10 yrs ago which may or may not be part of disease course. My gran also had ms. With further ongoing issues with arm falling asleep as I describe it I feel there’s enough to convince me it’s ms. Just not enough to convince ms specialist to diagnose and open up treatment options. I hope you are well after your relapses since being diagnosed and that you have recovered well from them. Have you now started dmt?


hmcampos
6 months ago

I thought you had already been diagnosed with MS, thus my answer. Maybe have a second opinion on another neurologist, I had my exams run through 5 neurologists so far, 3 MS specialists, 2 regular neuro practitioners. So in my case…no doubt. Maybe you ought to do the same.

As for the DMT, I started with Copaxone (horrible experience) and moved to Tecfidera. So far so good, will be 2 years en of January.

H


Anonymous
6 months ago

@hmcampos did you have further relapses before diagnosis and treatment was started? Im not sure how to go about having 2nd opinion they are all within the same hospital and he is ms specialist torn wether to just accept wait and see approach and just get on with things. I’ll see how much the new macdonald criteria will change things as they are recommending diagnosing if you have positive lumbur puncture with lesions instead of wsiting on new lesion or relapse. Time will tell.


hmcampos
6 months ago

Diagnosis of MS, specially after #MSPARIS2017, has been made clearer. MRI’s, lumbar punctures, new Mcdonald’s criteria are helping a lot.

I am not a doctor but as an MSer I would ask for a second opinion, eventually in another hospital or specified MS clinic but I understand your reserves. Up to you really.

As for your question: at the time I didn’t know that what I felt were “relapses”. I used to call them “stressful life periods”. Had a few, bigger ones were the left foot drop, left side extreme tingling sensations and ON. ON lead to MRIs, MRIs to diagnosis. Diagnosis to life changes. Life changes to current MS team. MS team to DMTs…

…curiosity drove me to shift.ms 🙂

Hope all goes well for you @roxy12.
H


Anonymous
6 months ago

Thankyou @hmcampos I will think about 2nd opinion , problem about attending a different hospital us it’s same Neuros that cover clinics . I will have plenty of time to think as will no doubt be a while to next appointment. Wishing you well with your current treatment and thanks for your response & advice


bok2bjan
6 months ago

Hi @anonymous – I am surprised you weren’t given the ms dx. You had lesions in more than one location and symptoms across time. Regardless – seems like you need a new neuro anyway. What would he be treating??? As stumbler said – treatment is to prevent future lesions – not existing ones! Steroids are used for active lesions.

I’m not pro DMDs, but if a person or neuro chooses to treat ms with them – early is the time! I certainly would be frustrated by this. I hope you end up having CIS and never have another episode, but I do hope you’re able to see a different neuro. Even if they’re in the same hospital network – they still think quite differently. It’s worth a try.

As I have often said – I’m not convinced the DMDs actually prevent disability – but it’s all we have. I support those who choose to take part. And I hope they indeed do help! Blessings my friend!


cameron
6 months ago

All hospitals are not the same. I don’t know where you live but one option could be to research (through shift, possibly) where the more forward-thinking neuro teams are and go privately for a one-off consultation. That wouldn’t tie you to that hospital but if you liked it you could switch your NHS treatment there. (The report from the second opinion would go back to your original hospital and they couldn’t ignore it). I saw someone local pre-diagnosis (a disaster) and was referred by the GP for a second opinion to London, because she knew they’d be better. I hastened the process by getting a one-off private appointment there and to cut a long story short, decided to join their NHS list. Yes, a nuisance and an expense, but totally worth it because I saw someone at the top of the tree who didn’t fob me off. It’s a 3 hour journey but their systems are such that they’re happy to ‘stack’ appointments so that you can have a morning and an afternoon one, for example (neuro + MRI or nurse clinic). Just a thought.


Anonymous
6 months ago

Thankyou

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