Hello everybody, I see my neurologist tomorrow to find results for LP and bloods. Pretty scared that it will show something other than TM. Definetly having new (mild) symptoms and old ones have not improved though I was told to expect a slow recovery of sensations.
In MS do the lesions ever heal or do they stay getting progressively worse?
Thanks and wish me luck :-)
Good luck x
Good luck x
Wishing you the very best of luck tomorrow.
Janet x
Good luck!
MS lesions can stay the same, get bigger, get paler, get smaller and even disappear. The body can repair lesions to some degree, but never properly so that even if a lesion is repaired sufficiently to no longer be visible on MRI, the area is still damaged.
Karen x
Thanks guys :-)
My neurologist has confirmed that my LP was positive for oligoclonal bands in CSF (negative in blood), and (IgG ??)antibodies are up too. He hasnt gone as far as diagnosing MS because he says he doesnt have enough evidence. He wants me to do the Evoked Eye Potential test, and I guess he needs at least one more episode of TM before a diagnosis of MS can be made. This is my first episode, and we are hoping my last.
He said that oligoclonal bands can also be present in TM and dont confirm MS alone. Does this sound about right to everybody? I'm a little worried about having to wait and see if another episode occurs. I just have to carry on being positive, but how do you just forget about what could happen?
Any advice appreciated folks.
Yes, people with TM can have positive LPs. It tends to mean a higher chance of developing MS but nothing is certain.
You would need another attack or a new lesion on your MRI to confirm MS.
I know it's a heck of a lot easier to say than do, but it really is best to try and forget what MIGHT happen. MS is simply too unpredictable and living in fear is almost certainly going to lead to regret and missed opportunities.
One thing is certain: no matter what happens, life can still be really good.
Karen x
Hiya, I have read all the posts and Karen is so right. It can be so frustrating awaiting information and diagnosis from the consultant.
I have had my first terrible episode it has taken me 7 months to recover I have been through hell and only feel now I am understanding the links with TM to Myelitis works and MS. I have waited 6 months for a diagnosis initially told it could be MS then isolated syndrome. I have finally been told that I had TM now myelitis with MS symptoms.
I still have numbness from the waistdown, weakness in legs, and numbness and hot fiery feet and prickly sensations. I have a blurring also in my left eye. It has now been 7 months will these sensations and mobility problems will the nerves repair itself ? as I am left with mobility problems.
At present the gabapentin and amatriptilin have managed to help with some of the sensations but not all so require to get increased which has been hard. I am trying to keep positive and would love to get back to work at some point.
Due to the episodes that I had they could not diagnose MS does this mean what I have may go or may not depending on the nerve damage.
I have went through such a roller coaster of emotions due to this illness I am hopeful that I will get better but unsure how much and it has had such an impact on my quality of life. I just have to do things differently hard to explain that to a child.
Any advice totally appreciated, this site has got me through some difficult times and I cannot thank people enough for their knowledge and understanding.
Regards, L
Rizzo, yes I saw the link with TM with positive LP. Tthe neurologist wouldn't / couldn't comment, so I found it on the internet myself. I dont feel too worried. MS seems so manageble. Half the battle seems to be getting a diagnosis so that treatment can begin.
Lindilou have you had an LP? I assume you must have if you had a bad episode. You are right it is very difficult explaining things to children. I have two young uns, and it was hard for them when I went into hospital the other week. It really affected them quite badly and yet my symptoms are very mild. I have been through the mill with worry though and that's taken it's toll at home. I think we are coming to terms with a few life changes now. I'm working on recovering from my TM, and I'm cautiously optimistic that it's a one off, though I'm also a realist and the new symptoms after 2 months cant be ignored. Everytime I feel a little bit panicked I breath deeply and say "caaaaalm" and it seems to be working.
What is Mylelitis? Is that different to TM? I've not come across that one. I'm assuming that means multiple TM outbreaks - but surely that's the same as MS? O.o Confusing!
Hey..glad you got your results..and it sounds like you have had a very tough time of it..take it easy and you have a pretty positive frame of mind so that helps also..sounds frustrating to say the least re neuro but if you ca focus on moving forward and getting your meds sorted to a dose that works..try not to think about what may or may not happen. Does the neuro want to see you again for check up? Perhaps keep a list of your symptoms, the ones from the first attack, any new ones or ones that get worse..would help..
Perhaps some neuro physio? They could help with things and asses your progress..you could get refered vis gp. Kids are pretty good at adapting to changes..and as you say you have to make changes whether these are for the short or long term..
hang in there in the meantime and you have the support of al on here..:_0 x
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