Hello all,
I am like many currently going through investigations for possible MS…
I have had optic neuritis twice and transverse myelitis twice in the last 4 years
I have had various MRI’s and have some lesions on my brain and spinal cord
I am 34 with 3 young children and I am still currently experiencing my second relapse of transverse myelitis that has gone all the way up to my arm pits this time and so far been 4 weeks 
it is awful and so scary! Trying to carry on as normal with your whole body being numb and tingling and so so so tight is the strangest thing ever!
Anyway… I am awaiting to get hold of my neurologist to book my next appointment to discuss lumbar puncture and last MRI to see if it is MS???
I have just recieved some of my lumbar puncture results in the post and I wondered if anyone has any knowledge or can compare to there’s?
I am impatient and curious as to what my body is doing! !
Thank you in advance 
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Hello Napper
Welcome to the forum. I know it’s not necessarily a place you want to be, but sometimes it’s a place you need to be. It is very scary being in your situation. I’m not at all surprised you’re frightened and feeling alone with unfamiliar results.
What might help with your posted LP results is this: Lumbar puncture | MS Trust If the letter you have states that you have ‘oligoclonal bands in your spinal fluid but not in blood serum’ (or something that says unmatched ‘O bands’, or similar), then an MS diagnosis might be coming.
This is the criteria by which MS is diagnosed: McDonald criteria | MS Trust You already know you have lesions in your brain and spine (do you know if they are ‘demyelinating lesions’? These are the kind which are typical of MS). You’ve had several episodes or relapses. You might be able to add together all of the information you already have and come up with the likely conversation you are to have with the neurologist.
I hope my writing this is not adding to your fears and worry. I think that sometimes just hearing a positive result one way or another is what you need.
One good thing about getting an MS diagnosis (if that’s what you get - I don’t want you to take from my post that it’s definite, it isn’t!) is that you can then get disease modifying drugs to ward off anymore relapses. Which would in turn mean that once you get over your current relapse, the chances are you won’t have more.
This is a friendly and welcoming community; any questions you have we’ll try to help. Do bear in mind that I am not a medical professional, just someone with MS and a bit more experience. So take my words with a large pinch of salt. I do hope you get your appointment soon.
Sue
Hi
Thank you so much for your reply…
The OBC are pending so I hope they come through soon. My protien is 465! When I have looked up normal range of protien in CSF it says 15 - 60mg so I would say I have extremely high protien?
Unfortunately no blood results to compare. So all I think so far is WBC is normal and protien is very high?
No idea on the lesion types… I have had 3 MRI’s in the last 4 months but none with contrast? Not sure why? Just been told 1 on my brain and few minor ones on my spine… and now this relapse has caused big one on my spine?
I know I have to wait for neurologist… it is just so bitty! I think when they said could be MS a year ago because symptoms had gone I didn’t worry… now with this massive relapse and no one being concerned and saying its “typical MS” it won’t do any harm its just sensation… I keep waiting to speak to neurologist thinking I will get an answer but evertime I don’t.
Thanks again 
Hi Napper,
There is nothing wrong with you seeking information. You have every right and I am sure everyone here understands your concerns.
I will say this: sometimes patients will not ask for clarification but realize sometimes the medical professionals may be so involved in their profession that they forget to put things in terms the patients can understand.
There is mother wrong with asking them to explain it ( labs, diagnosis and such) in your English. Best wishes to you.
Hi
Yes totally agree, as a nurse I also know that professionals get it wrong and so I am constantly trying to research and ensure I am getting the right information.
This experience has opened my eyes into a completely different side of healthcare… it appears this is actually “normal” that people experience something neurological and are left in limbo until more happens and the correct tests are done at the right time and it is so frustrating that health professionals seem to be so used to this however new patients are not and are left feeling un supported and un educated 
Thank you
I have no idea what that clinician-speak report says: I think you need to get your medical advisor to translate it into human for you. I hope that things resolve themselves for you soon - you do seem to have been hanging around having neurological problems for an awfully long time with little sign of anyone joining any dots. Even if the news is as you half-expect, at least it won’t come out of the blue. And the sooner you know what’s wrong, the sooner you and your medical advisors can come up with a treatment plan.
Good luck with it all.
Alison
