What if you didn't have MS anymore? The identity you've created after your diagnosis was now different, and the medications you take were no longer needed. The people you know with MS, you no longer have that first tying thread. Now before you jump for joy at the thought, what if you didn't have MS anymore because you were misdiagnosed?

I read a blog the other day about a woman who was misdiagnosed with MS and later received a different diagnosis after a few years and medication for Sjögren's Syndrome. It really got me wondering mostly because there is this teeny tiny little bitty voice in me that has always said "they're wrong" since my diagnosis. However, most of the time I think that little voice is a big dose of denial and have since moved on, started a website and jumped head first into the MS community. But often I read about other diseases that mimic MS and I really wonder what it would be like if I found out...I didn't have MS anymore.

For me...MS is apart of who I am. Ever since my diagnosis my whole life has changed, the way I think has changed, and the person I am has changed. People tell you not to change yourself or your life after diagnosis, but I think that pretty impossible. I started the newsletter originally because I needed to find a way to accept my diagnosis and find other people "like me". And I did. I have found some amazing people who have helped me more than they will ever know. I have found people who smile every day, and who rarely complain. I have found a group of people who I can relate to and while I may never stand in the same room as any of them, I consider some of them my best friends.

I would say that while my conversations with these people do include typical life stuff, mostly they're about living with MS. We talk to each other because we have few or no others to talk to about it. If I found out I didn't have MS...what would we talk about? Would these friendships disappear?

I update this site almost everyday...if I didn't have MS...what would I then do? I do feel like because of this site, I spend WAY too much thinking about MS and that alone has taken a toll on my psyche, however imagining my life without MS at this point...I don't even know what I do. Its like starting over...and although I'm only 2.5 years in to this journey, I still feel like its taken me a long time to get where I am. I feel like getting another diagnosis would just make me start the whole ride all over again and I'm not sure regardless of the new diagnosis that I want to do that. The reality is that if we are misdiagnosed, its not like its going to be something simple/fixable. Its most likely something very similar to what we're dealing with now. I think if I had a choice, I'd keep my MS...and my MS friends.

 


Comments

Emms

Sat, 25 Apr 2009 18:36:02

Well said - and analyzed.

I have been told by an MS friend that we all, at various times, think that we have been mis-diagnosed. I think that she's right.

I was originally diagnosed with ADEM, and told by 3 neurologists that "luckily" I didn't have MS. I latched on to an ADEM community. Seven months later, they changed my diagnosis. It took me some time before I detached myself from my ADEM friends.

Now if I am one day told that I in fact I have ADEM (or some other disease) I would stay in contact with my MS friends. We share experiences, questions, labels, symptoms...we all have a story to tell, a story that can help someone.

And yes, blogging about it makes it seem all-consuming. I question the sense in this.

*shrug*

 

Tom J. Kennedy

Sat, 25 Apr 2009 19:56:30

Have you heard about Ann Boroch's book titled: "Helaing Multiple Sclerosis?" Her website is:
http://www.annboroch.com

She has completely healed herself of multiple sclerosis and she was diagnosed at 19 years of age. I highly recommend her book and know that it is possible to completely heal yourself too!!

 

Lisa Emrich

Sat, 25 Apr 2009 21:08:08

Yes Bubbie has finally received this new diagnosis. But in a way, it's better than the confusing combination of 2-3 autoimmune diseases which the doctor's were somewhat leading towards.

It came down to one blood test which led the doctor's in the direction of Sjogren's Syndrome. Whatever her dx, she will remain a friend. Heck, when you know someone's real name and not just their screen name, you're friends.

BTW, for any readers are curious about this individual story, you can find her recent post here - http://bubbiesblog.blogspot.com/2009/04/minus-one.html

 

Yvette

Sat, 25 Apr 2009 22:33:05

When your disease is mild or subtle or whatever label you choose, it is quite reasonable to occasionally wonder if they got it wrong or maybe it is all in your head. But then it rears up and bites you on the bum!

In my 13 year journey-so-far, I have played "what if" a lot and there was a time when MS was a very large label I attached to myself. I think that is a normal stage to go through. Nowadays, having MS is part of ME and I enjoy the path I am on and try not to think "what if" or only to do so in a positive way - what if I hadn't had my kids so early? PHEW!

Friends? Oh I gather them wherever I go and the connection-point becomes less significant over time. Sometimes I look at Friends on Facebook and smile to think of how our relationship has evolved so much over time that I can't assign a "how I know this person" label as it isn't that simple!

 

Leon

Sun, 26 Apr 2009 11:38:53

In the Netherlands a couple of weeks ago it was all over the news that a certain neurologist had been diagnosing at least 20 people with MS that didn't have MS. Prescribing medication that these patients never really needed (I never actually found out what was really wrong with these people). But that was a case of deliberate fraude.

About the friends part: yes, I lost a lot of so-called friends, that simply stopped calling, emailing or whatever other method of communication we used.

But I gained quite a number of new ones too. And yes, I wonder too, if you would stop being a MS patient, would those friendships disappear, just like those other "friendships" I use to have?

And yes, sometimes friendships are born out of common areas of interest, so logic would dictate they would end, if those shared interests would go away.

And still, I would surely love to give it a try. Friends are great, but getting rid of MS would not be a bad thing either ;-) Maybe we could all NOT have MS together?

 

Lori

Sun, 26 Apr 2009 20:11:49

This is funny. I have one friend who has MS and I knew her for three years before we were both diagnosed; she got her dx 6 months before me.

I rarely talk to her anymore. We have LESS in common now that we have MS together, because she's not in as bad shape as I am, she's doing diet and exercise to to stave off her next attack, she's avoiding medications, research, etc etc, because her granola is way crunchier than mine.

I try to keep my MS conversations and connections strictly online. I think it has to do with the idea that MS takes up my entire life, mind and body that I don't want all the conversations and thoughts I have in my head said out loud.

I am batshit nuts, and I have so few real people in my life I don't want my crazy to rub off on them.

 

Bubbie

Sun, 03 May 2009 10:41:40

It's me, the re-diagnosed one. I didn't realize the impact the potential doubt would have on others. I haven't fully realized it myself. It's a wild ride. I, like many I've met went decades with symptoms of migraines, ON, and fatigue that went undiagnosed. For me I was in my 20's and by 40 had pretty much just quit complaining since I felt like I was being patronized: you're stressed, take 2 prozac and get over it. Oh, there was mention of fibromyalgia in the late 80's. So when more acute symptoms hit and I finally got a dx of MS, it was a relief. I felt validated in a way. I even felt that as unpredictable as MS can be, that I had a handle on it. I knew what I could expect and it was what it was. I became part of the online community. Well, I still feel part of the community, I've made good friends along the way. My symptoms are the same, with a few additions. Meds are different, and underneath it all, I'm the same. Just less confident in the doctors, tests and protocol.

 



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