Forum

In Limbo!

Hi Everyone,

I'm new and wanted to share my dilemma with you! 

I was told by the neurologist just over 2 weeks ago that I have inflammation on the brain & spine caused by MS.  I am waiting for a lumbar puncture to confirm if it is MS and if it is, which type.  In the meantime, I'm carrying on as normal with tingling fingers on my left hand and tingling in my neck and arm whenever I bend my head forward (I believe this is called Lhermitte's Sign).  I've also noticed in the last 2 weeks that 3 of the fingers on my right hand have started tingling (it's like an electric shock kind of buzzing feeling). 

I can't stand waiting around and just want to know if it definitely is MS and if so, which type.  I'm a secretary so having tingling fingers all the time isn't good!  Hopefully, the LP appointment will be soon - I just want it over and done with now!

Anyone out there gone through the same sort of experience?

x

Hello Sarah,

Just want to say welcome :slight_smile:

Everyone is lovely and supportive.

I have been experiencing neurological symptoms for 3 years and after coming on here and getting a much needed kick up the bum, I now have GP on side and am awaiting my first Neuro referral.

I hope you hear soon so you know for sure what is happening.

Sam xx

Thanks Samhappy2

Hope you get your referral sorted soon.   Will let you know if and when I hear anything!

 

Sarah

x

 

Hi Sarah, and welcome to the site happy2

I know it's hard to wait, but it sounds like it won't be too long until you get some answers (hopefully!). What type of MS you have is usually fairly easy to work out. If you have attacks and then periods when you get better (at least to some degree), then it will almost certainly be RRMS (relapsing remitting MS). PPMS (primary progressive MS) is the main alternative at diagnosis, but is much less common; it's when symptoms gradually get worse from day one, without remissions. To be diagnosed with PPMS, your symptoms need to have been getting worse for a year or more (or be clearly going to continue to get worse, if it's been less than a year since they started). PPMS often affects mobility early on.

Whatever type it is, there is some excellent support for symptoms these days so living with MS is nowhere near as bad as it once was. The vast majority of people find that they can still live happy, long and fulfilling lives. It really is not the end of the world.

Karen x

 

Hi Sarah

I too am in what they call limboland!!

My symptoms started in Feb with numb/tingly hands, legs and a tightening every so often on my rib cage (sounds like what they call the MS hug).  These feelings went after 2 weeks but I have since been left with numb hands and I also suffer from what sounds like lhermittes sign which is when I bend my neck my legs tingle.  I have had MRI scans and back in early June my Neuro found 1 lesion but as MS is hard to diagnose I have to wait 3 months for another MRI to see if further lesions have appeared.

I too hate playing the waiting game but have just received an app't for my next MRIs on 30 Aug and to be honest, I am petrified as it is getting closer and closer.  It was horrible at the start but I suppose as time goes on you kind of start to get your head around things and the possibilities of what it could be.  I honestly have taken soooooo much from these Forums though as they have helped me to realise that I am not alone in what I am going through.

Best of luck and keep us in touch

Emma x

Hello Sarah and welcome,

Sorry to hear about your problems and that you are in limbo. I have already been dx with SPMS, but the only good thing about being in limbo is that you read other posts on here and find they relate to your own symptoms so in a rather weird way you are preparing yourself to be told you have ms or maybe with luck you haven't. I wish you the very best of luck.

Janet

Hi everyone!

Thanks so much for all your thoughts.  I do feel much better reading about everyone elses' experiences and realise I am a lot better off than loads of other people out there.

Thanks for your thoughts!  Will keep you posted.

Sarah

happy2

Hi Sarah i'm also in limboland waiting for another mri and lp but really cheered my daughter up last night by trying to do some of the tests that u have to do carnt touch my nose with my eyes closed and definatly carnt hop we both fell on floor laughing at my attempts opened a bottle of wine and had a long lovely chat about wot the future mite bring and decided if and when thr esults come that i do have ms then it wont destroy me but make us stronger , good luck

Jackie

 

Hi everyone,

Just thought I'd let you know that I've got my LP appointment this Friday!  It all feels a bit more real now!

nervous

Sarah

Good luck for Friday Sarah ((hugs))

I too am undiagnosed and going through all the tests at the moment. My neuro told me I may or may not have to have a lumbar puncture depending on the other test results. Im happy to go along with every test she wants to have if it means when I go back in Sept I get a diagnosis.

Its very tough for us all at the moment and dont be surprised if you find yourself getting tearful etc at some point. I seem to cry whenever I see my GP! 

P xx