new to forum

[wildcat2x]

Hello.  I am glad I found this community.  I like what I've seen so far.  

I was just recently diagnosed with MS.  I am 42.  I first experienced the weird almost feeling like you had walked on hot sand for too long on the feet I think in March of this year.  Then I had double vision.  (the double vision lasted about a week and I thought this was due to other medication, which I stopped taking.).  By the time I got in to see the doctor the numbness had spread from the knee down and some spots above and my balance was shot but on the upside the double vision was gone.  From there it was to the neurologist.  It took me almost a month to see the neurologist, then do the gamut on the MRI's, evok potentials, blood tests, LP.  

You can request a copy of your MRI's from the hospital and they give it to you on a computer disk if you want to have them for your records.  They are pretty interesting to look at- although the report language can be difficult.  

I got Medrol in the hospital while they were running tests but after the MRI's.  It took a long time to get the LP results.  I was dx with MS July 2nd.  I just started Gilenya the 21st.  I still have the weird sensation on the base of my feet and I think that the sensation seems to vary a little.  

[wildcat2x]

Thank you for the warm welcome.

Shannon

[grannyhotwheels]

Hi Shannon and welcome to the family!!!  I'm sorry for the reasons you had to join us but very happy you found us... I'm very sorry you are having to go through all of this...

You will find this forum so different from any others... We are a family weather diagnosed or not... I have PPMS and RSD... The pain at times is unbearable but being able to come here and receive so much support and love has helped more than anyone will ever know...

Please keep us updated and remember we are here night and day to listen or give advise... Whatever you need at the time...

I'll be praying,
Carol

[wildcat2x]

Hi.  

I have swelling of the spinal cord at T6 dx as transverse myelitis with acute demylination.  Low spine is fine and there is some prolongation at C5-6.  The brain MRI showed many small lesions or white spots.  'course I have had back pain and still do on occasion but attributed it more to a lingering result from an accident I was in years ago.

The 7 hour observation on Gilenya went well (boring).  It was interesting that my heart rate was the lowest in the morning before I started the medication and then went into the same range as my EKG test I had before I started.  

Shannon

Thank you for the welcomed.

[sllowe]

Hi WildC!

Welcome to the forum. Glad to have you with us. I was dx'd quickly too, we are definitely in the minority amongst our membership here.

Do you have lesions in your spinal cord?

You are also only one of a few here on Gilenya - I hope it serves you well :)

Thank you much for joining us!
-Shell

[jujuminx]

Welcome to the forum Shannon!  So sorry for the diagnosis but yes, at least you know what you have and have begun treatment.

I have had symptoms on and off, mostly off, for 19 yrs. Finally got my diagnosis last August and am currently on copaxone. Currently I am symptom free and staying positive.

I too had the burning sensation in my feet and felt like I was walking on rocks/pebbles. Very annoying and was constantly looking down to make sure there wasn't something on the bottom of my feet. It's such an odd thing to not be able to trust what your body is telling you.

Anyway, nice to meet you. I am looking forward to being a part of your journey.

Julie

[wildcat2x]

Thanks.  My name is Shannon.  From a lot of the research I have read there are many people out there that have been waiting for years for their diagnosis and some are still waiting.  My diagnosis was quick in comparison and I still found it stressful to play the waiting game in limboland.  I like the title UWS - it fits pretty well.  thanks for the cup o' joe.

[cheesymum]

Hey, Cat!

I'm Betty although folks around here usually just call me "cheesy" and that's perfectly fine as well.  As my daddy would say "you can call me anything but late for supper"....  ;)

I'm over here in Limboland right now.  I have what I (un)affectionately call UWS - undiagnosed weirdness syndrome.  It seems to sum up the odd sensations, ailments, conditions, symptoms, whatever you want to call them that like to hang out with me.

This is a great group who have been unbelievably warm and welcoming since I pulled up a chair and made myself at home here.  I'm certain you will receive the same treatment.  I'm glad you found your way here.  Pull up a chair.  I just put on a pot of coffee.  Help yourself.

[Sumanadevii]

Welcome to  our forum, Wild.  Sorry you had to join us but it sure is better than being in limbo-land and not knowing what you are fighting.

I have the same thing going on with my feet.  Sometimes it feels like I have pads on the bottom of them.  Others will chime in but I think it is due to nerve damage.  Sometimes it goes away only to return..Sometimes it will just go away.  I hope the going away is what you will receive.

Make yourself comfortable.  We are a friendly bunch although some are opinionated...like me...lol.  Still you will learn a lot and find support here.