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Posted 6/15/2007 6:45 AM (GMT 0)
Hello Everyone!

So glad to have found you. I have been playing the waiting game....do not yet have a definite, firm diagnosis, but have been told that I 'probably' have ms. Had a major 'episode' 3 years ago...that left me unable to walk , lift my arms, walk etc..for weeks. MRI showed one lesion...evoked potential tests were suggestive but inconclusive. So now we wait for me to have another major episode. I already suffer from Crohn's disease which is related to the autoimmune response to the GI tract.

At present, I can't walk more that a short way before my legs buckle..or spasm. I suffer from vertigo often and have fallen as a result of this. Fatigue hits me like a ton of bricks at times....I will be perfectly well,and quite suddenly have a hard time holding my head up or keeping myself sitting up straight. I use a scooter to get around town...and one or two crutches at home.

This waiting game is frustrating . I've been asked to join a local MS support group but feel that I can't really attend without a firm diagnosis.

How long did some of you have to wait for a firm diagnosis?

If you'll allow me I'd love to come 'visit' with you from time to time. ....even with just a "probable ms" ?

Marie-Claire

Post Edited By Moderator (Kimber) : 6/15/2007 3:20:43 PM (GMT-6)

Posted 6/15/2007 10:21 AM (GMT 0)

Of course you can come here with a probable diagnosis...or no diagnosis at all, but still searching.  And you really might want to check out that support group, too -- I suspect there'll be people there in your situation.

Is your doctor offering any treatment for you? Many doctors now will prescribe one of the MS drugs for someone labeled "probable", hoping to slow or stop any further exacerbations.

Posted 6/15/2007 12:37 PM (GMT 0)
Hi Marie-Claire -

Welcome! There are many of us in what we call 'Limboland' here. Many more will be here to say hi and introduce themselves. I'm one of the Limbolanders, but I've only been here since Oct 2006. Right now I'm like you, we (neuro, MS spec and I) are just waiting for a major exacerbation to prove anything. I've got many symptoms, but just not enough lesions in the right places to dx me. Kind of a melancoly (sp?) feeling on that one. I would take uppity's advice and see if you can be put on something for the 'probable' dx especially if things are getting worse for you!

Please visit us often, you'll find many friends here.
Posted 6/15/2007 9:32 PM (GMT 0)
Hi Marie-Claire,

 

   We are glad you found us too!  You are more than welcome.  We have many folks here going through the dx process like yourself so don't be shy about posting!  Time wise to dx varies with everyone.  My husband had an exceptionally long wait, others are much faster.  Hang in there and you might want to reconsider that support group.  Even without a definate dx they might be able to support and offer advice on the problems you are facing presently.  We'll be here for you too! 

 

   I edited your post only to add a title to get more exposure for your post.  Please feel free to change it if you like :-)

 

 

Kimber

Posted 6/15/2007 10:05 PM (GMT 0)

We are all happy to welcome you.

Just dropping by or staying for awhile? Make's no difference to us.

Many of us would be lost without the friends and the comfort of this forum.

Glad to have you with us. yeah

Dog

Posted 6/15/2007 10:24 PM (GMT 0)

hey M-C,

Welcome!!!  I am glad you found HW.  It is a wonderful and supportive place for everyone.  You have a lot going on and deserve some support.  I agree with everyone else, consider that support group.  You may find some great people to support you and to receive your support.  Hang in there and again welcome.

Love and prayers,

Posted 6/16/2007 2:29 AM (GMT 0)
Hi Marie Claire,

Welcome to the board. Its nice to meet you. I hope you get some answers soon. It took me a year and a half to get dx'd. It really wasn't what i wanted to hear, but it feels good to be in the right hands now. I hope everything works out for the best for ya. Join us on monday for chat. Take care, you are in my thoughts.

Lynn

Posted 6/16/2007 7:27 AM (GMT 0)
Thank you everyone for your support and warm welcom. I will definately re-consider the local support group and will visit with you often.
Marie-Claire
Posted 6/16/2007 11:37 PM (GMT 0)
Hey Marie-Claire!

Welcome to the board!! Sorry i'm jumping in here late, been quite busy and not able to be here much lately. I'm glad to see u'll reconsider the support group! U'll likely find lots of support there and the face to face contact with others who are going thru what u are is sure to add some extra comfort. I'm also so glad u've found us!! This is a wonderful site with lots of wonderful people as u can see from the sweet posts u've already gotten. No worry as to where u are in the dx process. I"m in limbo as are many here. We all need answers...and sometimes the only place we can get answers is from others like ourselves. The answers we need from the doc can sometimes take a long time.

Like Lynn said, we have live chats on Mondays at 6:00pm. I hope u can join us. It's a great chance to get some real time answers to u'r questions as well as getting to know the other members. We usually have a ton of fun while getting some much needed info. Please do join us anytime u get a chance.
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