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My letter from the neuro!

Hey guys I hope you are all well. I received my letter from the neruo y day regarding my scans and would love to know your take on it.

my symptoms now are lower back pain/tightness and my left knee is inflamed/swollen. I constantly have ice packs attached to me!

Would love to hear what you think as at the moment i REALLY am in limbo and i hate it!

Here is the letter I received. Would love to know your take on it!!
Bex x

This lady’s MRI spinal cord shows two regions of demylenation- one at C6/7 and the other at T7, mostly dorsally disposed, accounting for her sensory symptoms.

Her MRI brain has similarly shown multiple areas of white matter hyperintensity, suggesting demylenation. HER vitamin B12 is normal and triple anaemia serology negative. We awaint the results of a few other diagnostic blood tests, although I expect these to be normal. Her ESP and CRP were recently normal.

In summary her clinical presentation and MRI findings would be in keeping with a single episode of multi focal CNS inflammation. Her symptoms were immediately preceeded by a sore throat and swollen glands a month ago that is a well recognised trigger for this sort of problem. However, whether we are dealing with a one off episode that does not repeat itself ever, or whether this may reoccur in the future is not something we could know for certainty for now. I have discussed with her that this could all be the effect of a virus that does not recur. However there is a chance that this may occur in some other guise at some point in the future, in which case multiple sclerosis could certainly be a consideration.

I have suggested that I review within a month to ensure that the symptoms are improving as we would expect. I have also suggested that we could repeat the scan in 6 months which can provide further information as to the likelihood of this turning into MS in the future. Were this to be the case, we would refer on for disease modifying therapy specifically, although after a single episode there is still no strong evidence that such treatment needs to be started, even if the repeat scan were to be showing new symptoms.

What do you think guys?

x

Hi Beccy,

I think he’s explained it pretty well.

He’s convinced you DO have demyelination (a characteristic of MS), but not that it’s necessarily caused by MS, in your case.

Because of your sore throat and swollen glands in the run up to it, he thinks the cause might have been viral (non-MS).

He’s saying it’s impossible to predict whether that’s the end of it now, or whether symptoms might recur in future, in which case MS would again have to be considered.

The good thing is he certainly seems to want to keep an eye on you, and it’s good that he’s suggesting a further scan in six months. That’s how I got diagnosed!

Sometimes new activity is visible on the scan, even if you’ve had no, or only minimal, new symptoms.

Not that you want to get diagnosed: you may be lucky, and it WAS just a virus, and you will get no further trouble. But if it is anything, at least you’re being monitored now, and they should pick it up.

Tina

Have a read of Karen’s reply explaining ADEM, It may explain some of what he thinks you may have. Best of luck with it . I have the back pain too and can only sympathise. x

Thanks for both the comments!Yes I have spoken with Karen she is so lovely. I know the letter is fair but I hate the whole being in limbo situation!!! I just wish I could know now. I have decided I am going to have another brain scan in a couple of months time to check if my brain lesions have gone, as hopefully this would indicate it was not MS.

yes the back pain is hideous. It feels like someone has wrapped a band around me and is pulling it really tight!!! I was given steroids but came off them as it makes me feel sooo awful!!

How did you both get diagnosd?

x

!Hi Beccy,

I haven’t been dx. I’m like you, stuck in limbo and it’s hard not to let it get you down but try to stay positive. I’ve decided to try and claim my life back starting with joining a slimming club as the contents of the fridge just seem to leap out at me. I’ve lost my sense of taste so I can’t even explain why I’ve attempted to eat my way through my problems!

My neuro thought that I could have had ADEM which is why I refered you to that feed (there you go obsessed with eating!) Though he is going to another brain scan in Jan to rule this out. I get really tired but I tend to nap while the kids are at school they are 7 and 8 so I need my energy for when they are at home.

I am off to see the gp tomorrow so hopefully I’ll get some painkillers that work!

I know its easy to say but try not to get too down, though having said that the dark days are unavoidable.

Good luck!

Chis x

Hi Chris,

Thanks for replying. Uve lost your taste omg how awful!!! I wouldnt be able to survive im such a foodie!

Well at the moment he thinks its a virus as I was ill about 6/7weeks ago so it might have just got into my nervous system somehow.

This neurologist loves putting me on steroids but I just absolutely refuse. I hated them! Ibuprofen and ice are my new best friends atm.

I really hope you get some painkillers soon as that will help you and good luck in your slimming club!

I am trying not to get too down, but I feel like my life has changed since all this. I am only 25 and am currently looking for work but this is in the back of my mind 24/7. I have dark days but until I know what is happening I think that is normal. I am def going for another scan in a few months.

How do you get over your dark days atm? I need help!! lol

x

Wine and chocolate!!!

Seriously I have a wonderfully supportive husband who keeps me in check by insulting me frequently!

It helps if you have someone you can talk to, even though you haven’t been diagnosed your local branch of the ms society might be worth a call. It means at least you can talk about your symtoms and they sort of know where your coming from. Having said that, I haven’t plucked up the courage yet to actually attend but I did speak to a lovely support lady who took the trouble to call me after my last neuro appointment.

I have found this website invaluable and it helps me tremendously. If your feeling low, log on and someone will always be able to assure you your not alone.

Good luck with the job hunting but remember that stress will not help you, so I know its easy for me to say, but try and just do what you can.

Chis x