My "Limbo" Story of nearly 20 years ...

[CindyLWho]

Hi Cindy~ As one administrator for MSWorld's message boards, I want to reassure you that your private information, as well as others is highly regarded. Privacy is upmost in our minds - this is why we do not allow posting of blog, email, phone #, personal URL's and addresses. (Guideline 2 &3)

People choose to update their Profiles listing the above information, but do so at their own risk.

We wholeheartedly agree with your statements and want to let you and others know what you wish to share with us is entirely up to you and what you feel comfortable with. If there are constraints accompanying your story, it is most assuredly OK! You have shared a remarkable story here of the complexities of your MS diagnose and I wish you good health in your future. I hope you will stay with us as I'm sure you will give lots of support and pass along great information. That's what MSWorld is all about!

Thank you so much; what a beautiful and well-spoken reply ... I am forever grateful for the relief that you have given me here. I read everything (Rules/Policies/Etc.) prior to opening my account here and made every effort not to "cheat" while keeping my Privacy & Confidentiality (and that on the part of others) intact. Thank you for accepting me as I am.

Thank you for understanding my "battles" aside from MS. I am here to attain support and offer all that I can pertaining to my experiences with/of same; I cannot offer more ... however, I feel that I have much to share. I would not wish what I endure upon the Devil himself. I never want to know of this on the part of another ... it never had to go this far.

[firemom31]

Just a thought....

Okay, I truly don't mean to be insensitive. I don't know you, and I'm sure you've gone through seventeen shades of whatever to get to this point.

But, you've been looking for an MS diagnosis for 20 years?
A whole life goes by in that time.

I've had the diagnosis for nearly 20 years.

And now you've got that diagnosis, what good does it do? You've got a d/x of SPMS. There is all that can be done about that. You can't "step off the tracks".

I'm sure if you haven't been able to get an explanation for your symptoms it must be a relief to have a reason.

I'm sorry I sound so awful.

As I was reading this thread, and particularly this post, I felt the need to reply. I too have spent 20 years trying to get a diagnosis and I don't think I am the only one. There are many reason why it can take this long. Mine is simply because I didn't have insurance much of the time and would stop going to the doctor and spending money on tests once I started to feel better.

I was a widow with two kids to raise, so when I felt better, I had things to do. Doctors said it may be MS, but I didn't want to hear that, so I chose not to believe it...until the next relapse.

I moved several times over that 20 years and sometimes started over from scratch with new doctors, new tests, new speculations. We all have MS in different ways, just as our lives are all different. A big welcome shout out to Cindy Lou Who, we are glad to have you.