Myelitis?

New diagnosis and before diagnosis
1

Hi All,

An update again…I went to see MS neuro last night. Well he officially said i had a myelitis!

I have a lesion on c3/4 spreading over the 2 vertebrae and its over a quater of my spinal cord, and i am officially NOT nuts, didn’t imagine symptoms and he said that all my symptoms would be caused by this lesion.

BUT…there were 2 suspect lesions in my brain MRI but he said he was unconcerned about them, i told him about losing my hearing for 3 days and then he had another look at the lesions and said he was going to discount them for now???

The radiologist report said no abnormalities and after he having a moan about how useless they are he then looked at MRI himself and found these 3 lesions.

So, he basically said he cant give me steriods as i have had symptoms continuously for 7 months now, he said they wouldn’t have worked anyway, but i can go to my GP and he can help with some symptoms by giving ne some tablets…maybe?

WTF…helpful so and so he was lol. He said the myelitis may still go but could be permanent and he cant tell me more than that. But he did say if it went away and come back then i would be diagnosed with MS…so brilliant, it a sit and wait !

But if it goes and never returns its a myelitis and i hopefully am done!

He did agreee so see me in 6 months time to asess how i am doing and that was only coz i asked him not to sign me off!

But he was a very nice, sensible guy, he asked me loads of questions and showed me the MRI and let me ask questions, so overall i not disappointed, but i feel happier knowing that i am being watched if you know what i mean.

I am scared about the future now, but he said try and forget about all of this and to cary on with my life until/if the time comes that my diagnosis may change. So basically still in limbo kinda and hoping i dont progress to definate MS.

Any advise on what to say to GP now for meds as the shaking it driving me nuts and i could really use some releif from these symptoms.

Should i get 2nd opinion or let it go? Am i satisfied with the answers…yes but i am still concerned its not over…he seems to think MS is possible as i have partial myelitis and this is common 1st path for MS.

Help guys, what should i do?

Oh and hope everyone been ok, i have been reading threads and listening to you all, and if i am done for now…thatnks for all the support i have recieved, you are all bloody brilliant !!!

Lea xxxx

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oh and can i apply for benefits so i can reduce my working hours a bit? I dont have MS but is myelitis still a claimable thing?

Any advise would be welcome.

Lea xx

3

Rather worrying that the radiologist didn’t spot a long spinal lesion!!! Jeez! Myelitis is a diagnosis and while some people go in to get MS, about half don’t so the best advice I can give you is to try and put this behind you and MS out of your mind: there is no point in worrying constantly about something that might never happen. If the hearing loss was neurological, it would have been caused by damage to the auditory nerve - it sounds like this neuro can read MRI so I would assume that your white spots were nowhere near the nerve’s path. It doesn’t mean that there definitely isn’t any damage, just that there’s none visible. As far as benefits are concerned, it’s symptoms they’re bothered about not diagnoses. Having a diagnosis makes everything that bit more believable to the assessor, but in theory it shouldn’t influence their decision. Re meds: what’s best depends on what type of shaking you have. If you have internal, sensory shaking, then a neuropathic painkiller like amitriptyline, gabapentin or pregabalin would be the obvious choice. If it is real, physical shaking then it will depend on whether it is tremor or spasms. Tremor is difficult to treat, but some people find beta blockers help I think. For spasms, baclofen is the standard med, but a neuropathic painkiller can help too. Hth. Karen x

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Hi Karen,

Thanks for the advice, I have put it behind me already, kind of lol, and apart from speaking to GP this morning who said she will speak to neuro and see what he advises for the tremor as it is a visible shake in hands legs etc and affects my work!

She will try and give me something for it if she can! So very helpful!

Also i dont have MS right now and i happy with that for sure! The if/when/maybe is not in my future right now and i am concentrating on seeing if they can take some of my symptoms away while i carry on with my life!

I am calmer for sure knowing now whats wrong with me and feel better that i am not nuts and that it may/may not go away at some point. I have alot of problems still and things i cannot do like i used to but i have managed to adapt so far without too many bumps and will continue to do so. I wish it would go away completely but until it does i will cross that bridge when i see neuro in 6 months time, so i will not think about anything until he suggests otherwise!

Thanks for your help with meds, i have asthma so beta blockers are a massive NO, but i will mention some of the others to my GP and see what they say.

Again thanks Karen you are a star!

Lea xx