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Left in the dark again

Can any one give me some advice I finally got to see another neuro today as I was dx with benign ms in sept the neuro did a lot of things to me she has told me that I have slight balance problem my eye if flickering after my episode of optic neuritis and the numbness in my hands is down to my brain as well she showed me my MRI picture and I have 4 lesions on one side and 3 on the other side of my brain they are going to start me on a 3 day course of intravenous steroids but I’m confused she has ordered me to have a lumber puncture not had this before so does any one think that she doubts I have ms I asked her what stage it was and her reply was ms is ms but it is mild I’m rather in limbo I never thought I would have to have the lp with my scan result Any info would be a great help

Hello, I hope this helps - I was diagnosed earlier this year based on clinical exam and MRI scan of brain and spine. I didn’t have an LP at the time but my Neuro wanted to be thorough so I had an LP a couple of months back. At the time of diagnosis I asked if the results of the LP would change anything and he said no. Your Neuro is probably just being thorough, only my opinion though!! Best wishes. Sam x

Judging by how they can go about diagnosis for MS, it looks like I’m agreeing with Sam and they’re being thorough.

It’s not an easy diagnosis and they don’t just like to hand it out.

Judging by the McDonald criteria, it might be that they want a LP to help with diagnosis of MS.

Do you not have any notes you can look at or an MS nurse to speak to?

Sarah x

No I don’t have any notes or an ms nurse the neuro just told me the lesions on brain was inflamed when scan was done and the lesions I have are typical of ms so I guess il just have to wait again it’s the waiting that’s making me crazy

Hi, as you already have a diagnosis and evidence of ms on an mri, you dont have to agree to an lp if you dont want one.

Discuss it further with your neuro or ms nurse.

pollx

Thanks for replying to me I think I will give the hospital a call to get in with an ms nurse x

Hello Mazza. Can I just point out that a lumbar puncture is an invasive procedure that you the patient has to consent to it. Your neuro may have ordered it but its your decision as to whether you want it. Good luck, Noreen

Thanks Noreen the thought of having it done does really scar me do u think it will help I don’t know what else the test will show the neuro did not really tell me a lot she did say with the lesions on my brain she was almost certain I do have ms but mild also the test she did I was having a relapse that is why I’ve have to have Iv steroids. When I asked what stage it was I got no answer do you think the lp will give me that answer I really feel left in the dark at the moment I just can’t seem to get any straight answers.

Helo Mazza. There’s nothing to be frightened of with having a lumbar punture, the doc will localise the area so don’t worry. I was just pointing out that its your choice. I have had a lumbar puncture with MRI’s that showed lesions of brain and spine. You can have positive or negative lumbar puncture…the results are not a definitive answer for MS. Speak to your MS nurse as mentioned above. I just wanted you to understand that its your body so always remember to ask GPs/consultants why they are requesting tests etc…keeping control will help to keep you clam. when you ask a question make sure you get an answer. I know its not always easy, maybe take someone with you to the appointments to give you more confidence. Good luck to you, Noreen

Thanks Noreen I’m going to call hospital tomoz to get an appointment with ms nurse hopefully I can get some answers Marie x

The neuro must have been sure before prescribing a DMD. I gather LP results help with working out prognosis - those with a clear LP (only about 5%) tend to have milder MS).