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Lesions but no diagnosis

Hi,

I feel so lost, I had a brain and cervical spine MRI a couple of weeks ago that showed 2 lesions on the brain that “cannot rule out demyelination” according to the report yet my Neuro won’t diagnose MS or anything else. I had to push for LP which he has agreed to request and then see me in 6 weeks for the results. I know that if it’s MS it is currently mild as my reflexes are considered normal and currently I only have l’hermitte’s sign as a symptom but 7 years ago I had months of muscle weakness in my legs that left me barely able to climb my stairs and more recently I had weeks of tingling/numbness in my fingers :frowning:

I am so worried that all these delays are delaying me getting DMDs that could reduce the severity of another relapse if it is MS. I am married with 2 young children (8 and 3) and I work full time doing a job I love, I don’t want to wait until a relapse is severe before I get a diagnosis and DMDs.

I am trying to be positive etc but am starting to feel very down and alone, I just wanted to offload here if that’s ok.

Chaz x

Hello Chaz

That does sound difficult to live with. At least you’ve got an LP and follow up arranged.

It seems like it’s taking forever to get a proper diagnosis I’m sure, but it can take some time. The neurologists have to be certain. And the rules regarding disease modifying drugs (DMDs) are quite forthright. So if you have an LP that has Oligoclonal bands in the CSF, then presumably you’ll be diagnosed with MS.

You need to make sure in the meantime that any symptoms are recorded. Start keeping a diary yourself soyou can report on problems, but also make sure that if you have anything that could be registered as a relapse (https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse ) that you have it noted on your neurologists records. Do this by writing to him/her if necessary, or phone his/her secretary and ask if you can email them and have that forwarded to the neuro.

Hopefully your LP will be soon.

Let us know.

Sue

hi chaz

of course it’s ok to unload on here.

this forum is the reason i didn’t go completely round the bend.

just part way round the bend as it happen!

i have nothing sensible to say so i’m off to my pit.

carole x

Hi Chaz

just wanted to say you are not alone - I am in a similar situation (had 2nd MRI 2 weeks ago) waiting to have LP (which I am dreading). Consultants not sure what my lesion (s?) are… I am off work at moment as just couldn’t cope with the situation and being on pins constantly getting phone calls from consultants etc. I have 3 children (11,10,7). So I totally empaphise with your situation! Hope we both get answers soon xxx

Thank you all for the advice and support, I’m hoping the appointment for LP comes through the post soon although I’m a bit terrified of the procedure as the headaches sound awful :frowning:

The consultant prescribed some epilepsy drugs for the L’Hermitte’s symptom that was getting very uncomfortable, they work well at reducing the symptoms but do make me feel a bit spaced out and dizzy sometimes. Can’t have it all I guess!

Hope your LP goes well ejc40 x

Thanks Chaz you too xx

Advice on ~LP, lots of caffeine after is really good. My experience was largely positive with a LP, had no headaches and was back in the gym after a couple of days. I read up loads online about the LP and the headaches, and no exercise for a week after. For me, the most painful part was the injection of the local anaesthetic, there was a moment where they hit a nerve which twinged but was soon fixed with more local.

Make sure they make you lay in the fetal position, one of my friends had a LP and was laid out flat as was being done by a trainee, in the end a consultant came in and got them to change their position and it went a lot more smoothly!

Lots of full fat coke before as well as after is the general advice. Take a bendy straw with you as you should also stay laying down for a couple of hours afterwards.

Not everyone gets the headache, even if they don’t follow the caffeine advice, but it’s worth doing, apparently the headache is dreadful (I didn’t get one - and mine was so long ago I didn’t have the benefit of any advice like this).

And Djs is so right, don’t even think of letting someone stick a needle into your spine while laying down flat. It won’t work. You need to have your spine stretched right out in order for there to be space between vertebrae for the needle.

Sue

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