Tuesday, February 26, 2013

Pre MS Diagnosis Diary Excerpts Part 1

I remember when my MS diagnosis ordeal began, it was the 11th of November 2003.  By most MS diagnosis standards, mine was a walk in the park, lasting only a few short weeks.  Most take months and even years to reach conclusion.  Anyways for this post I am going to "reveal" extracts from my personal diary for you for some added insight of where my head was at when I was in the process of being diagnosed.  Obviously I am not adding everything; I need some privacy (some would argue writing a blog defeats this purpose), as does my husband, but I think you will get the picture of where I was at in general.

16th Nov 2003, "I may have Multiple Sclerosis, so my doctor, Dr A said on Tuesday.  I have semi-numb feet and they have been this way since I started my new job at M approximately six weeks ago.  I just thought because I was now standing more and walking for an hour in the mornings that my feet were adjusting from sitting in front of a computer all day.” 

“Doctor A said that it would be unlikely I would have MS, but there is a small chance that I do.  He said that if his wife was presenting with numb feet he wouldn't send her to the neurologist.  I decided it was important for me to know, so that I can make the appropriate lifestyle changes and stop worrying.  So I have a neurologist appointment in just over a week.”

“I still feel tremendously scared.  I worry about my future, my plans, how I will cope.  It is an ugly, debilitating and humiliating disease; well that's how it seems to me.  I am scared and upset and worried beyond belief.  I am worried the love of my life, Ryan will leave, when it has taken so long to find him.  On the other hand I (fortunately) feel healthy and am lucky to have supportive friends, family and Ryan.  I am lucky there are so many things I can do to re-balance the unbalance in my body that may be occurring.  I have started to read up on MS and there seems to be a lot of research and lifestyle changes and dietary changes I can make to re-balance my immune system."

At this stage I was already reading George Jelinek's book called, Taking Control of Multiple Sclerosis.

From the same date, "I guess it is fear of the unknown that scares me the most... what will happen if I do have MS.  I guess like the book says I could see MS (if I have it) as a challenge.  It is possible to maintain my health and this is the challenge."

"I don't know if I have MS.  I am worrying about things in the future that may not yet happen.  It's not time to worry, think about all the expended energy I am wasting by worrying about something I don't even know if I have yet. I don't have MS, I don't have MS, I don't have MS..."

17th Nov 2003, 5.40pm, "I have just finished the MS book by George Jelinek and it has proven to be most helpful... I feel I am prepared to face the neurologist now - I am more educated and more able to understand.  I am still scared because I don't know what the future holds, but neither does anyone else.

10.30pm, "Feeling low and worried again... I think I have more symptoms.  Part of me freaks out, part of me is rational"

I had a very interesting dream on the 18th of November that I wrote about, but I'm not going to add it in here at the moment, otherwise this will be one massive post.  I promise I will write about it soon.  I think it gives amazing insight into how my unconscious brain was processing the MS information and emotion overload.

23rd Nov 2003, "My feet are still sort of semi-numb, it's hard to describe.  The skin on my legs is sort of sensitive to touch.  I haven't been worrying about it as much, which is good.  I guess I've gotten used to the limbo of waiting.  My neurologist appointment is on Tuesday, less than 72 hours away, thank God."

24th of Nov 2003, "Spoke to Dr A today and I have a slightly abnormal ANA test.  This test tests auto-immune response.  I had a look on the 'net and there can be a number of reasons for this to occur.  It can occur in healthy people (ie a false positive test) or it can indicate you are fighting a virus.  And it can, of course mean auto-immune disease. More tests need to be done first."

"Again I am scared and worried for all the reasons I was before.  Fear of the unknown, babies, travel, study, course of the disease and Ryan.  Of course it is illogical to worry about those things now because they are always the unknown.  Nothing has really changed since yesterday."

"Worry.  It is such an unproductive emotion.  It doesn't achieve anything.  It makes me upset and stressed.  Life will go on.  No one knows the future and that is why I have to stay in the moment."  

So those are the first few days leading up to my MS diagnosis.  I’m going to add in a few more diary entries about the diagnosis and I am going to get to the point about this little project of adding in diary excerpts regarding my diagnosis soon. 

How do you think I was fairing?  I think I sounded remarkably composed.  Looking back I assumed I was not at all composed, but my diary tells quite a different story… to me anyways.  I think I was shitting myself, but I had some amazingly supportive and  understanding friends, a fantastic psychologist and an awesomely consistent, unshakeable and optimistic boyfriend, now husband.  I think he saved me from imploding.

I know I have been writing in parts of late, but I haven’t got piles of time to pump out a super post and my thinking is that maybe you don’t have hours to read a super post either.  Please leave some comments about how you think I was going during my diagnosis… it would be interesting to hear other people’s perspective on this or please tell me about your diagnosis.  Writing is cathartic you know!!  Until next time… sayonara.


  1. It is interesting to see the change in your blog design and layout/colour scheme. I think it is very indicative about how you are feeling about your MS being under control compared to the past. Just recently you posted about expecting the worst so you are prepared or any other news so it is optimistic news. I again find this a little confusing compared to your “self-positive” talk you now refer to in your previous “pre-diagnosis”. Is this a trait that can be developed/changed or is it something ingrained? Simple terms in a simple question to a Psych I guess…........

    1. Oh don't you read very closely!! Hmmm, I think it takes a lot of care, practice and on-going focus to change ingrained habits. Pre-diagnosis I tried very hard to be positive, because I was not yet diagnosed. When diagnosed I fell apart and now that I am cruising, it is much easier to be optimistic (no I dislike the use of that term) easier to be positive. But add in stress and again it is tough to be always positive. I have had years of practice for preparing for the worst, many of those I did it without even thinking about it. Please stay tuned because I will give you some other things to ponder shortly.

  2. I think you reacted in a completely normal way. Grieving your health as you knew it and your future as you viewed it was mandatory; and grieving is never pretty. I wrote my diagnosis story awhile back - maybe it'll make its way onto my blog sometime. Today, I'm heading over to read more of your writing.

    1. Thanks Climbingdownhill. I'm busy writing an assignment, but I will check out your blog very soon. I think it is important to write about our diagnosis stories because it makes other people feel like they are not alone. I hope I get to read your story on your blog too.


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