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.

Six Month Tysabri Results - Part Two.

Where was I?  Oh yes that’s right.

So I sat down at the kitchen bench, with my cup of almond milk coffee and opened the envelope.  Looking at the envelope now I must have opened it very cautiously and apprehensively, as the sticky flap is not torn at all.

I’m not sure if you have ever looked at a radiological report, but it has a bold comments section -  a summary of the results, which once you unfold your letter, you can’t miss (even if you are trying too). 

So are you ready?  My comment section reads, “No significant interval change since 7 June 2012”.

What does this mean?  Since starting Tysabri 6 months ago, I have not had any activity in my brain that is related to MS at all.  (Some might agree with the statement, I have not had any activity in my brain… since ditching my thesis!)  In essence right now my body is behaving as if it does not have MS.

The findings section reads, “Stable intracranial white matter lesions are again demonstrated with distribution and appearance being typical of demyelination.  There is no evidence of new enhancing or non-enhancing lesions.  There is no evidence of significant callosal or cerebral hemisphere atrophic change.  There is no evidence of PML or an intracranial mass.  There is no diffusion restriction.  The large cerebral arteries and major dural venous sinuses are patent.”

So the wonder drug Tysabri, or as my neurologist put it, the gold standard in MS treatment right now is WORKING for me!  In precisely the way my neuro predicted 6 months ago, with no new disease activity being present – at all.

Am I happy?  Hell yes.  Will I sit back and be content with these results?  Hmmm partially, maybe if after the next MRI in 6 months everything is all clear I can relax and trust Tysabri is going to continually work for me.  It is reassuring to know that many people who started taking Tysabri in its trial stage, have now been using it for 8 years to control their MS successfully – that is with no new lesions.

My neuro also predicted that I would have symptoms disappear that I may have even considered my normal way of being.  Well I know it wasn’t normal but my daily morning ritual of waking up and stretching in bed is now sans the Lhermitte’s sign.  Which was the very tingly, vibrations (a bit like very bad pins and needles) that used to vibrate down my spine and into my legs… and sometimes into my arms.  It was my daily reminder of my MS and on certain days it would predict how I would feel; if it was particularly bad, then my life was ending because my MS was getting worse.  I knew that wasn’t necessarily the case, but concerns, no matter how unfounded you are told those concerns are, can still have an impact on your life.  With a chronic disease like MS, you are hypervigilant in detecting new or worsening symptoms.  Hey, but you know what, I have rarely had the shocking Lhermitte’s sign in the last 5 months or so.

I cannot foresee any reason for me to stop Tysabri.  I do not have the JC virus and my lovely new Tysabri buddy is working for me with no unwanted effects.  One reason to stop, is if my body develops antibodies to Tysabri.  I guess you know this is occurring when your MRI shows new lesions or the cause of you having an early MRI is new symptoms.  I don’t believe this is going to happen to me.

If you are considering starting Tysabri and you are JC negative and have no history of taking immunosuppressant drugs then I would say go for it.  Tysabri may just be the drug to halt the damage your MS is doing to your body until a cure is found.  If you fall outside of this category, ie you are JC positive with a history of immunosuppressant drugs, please take a look at this link Natalizumab-associated PML Risk: June 2012 Update , seriously talk to your neurologist and consider your options (ie do your research), carefully.  Get a second and third opinion if necessary.  This article may also be worth anyone who is taking Tysabri or considering taking Tysabri perusing,  Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation. 

Unfortunately Tysabri is not a cure.  When you stop taking Tysabri, your MS will reactivate most likely where you left off, but maybe worse.  So please do your research, consider your options, talk, talk, talk to people INCLUDING your neurologist and your local MS society. (Have I made my point yet?)  Any medication you are considering putting in your body should not be taken lightly... ever! 

There you go, that’s my post.  Sorry to anyone who couldn’t stand the wait.  I think my life is like a novel… it goes on and on, as do your lives. (If you have no idea what I am talking about, good.  But if you need context to that last sentence then check out the comments section on my last post!)  I like to share my MS stories in case they can help anyone who is in the same or similar situation.  Thanks for visiting and please leave your comments because I love them (and I promise I won't post about them much!)  Until next time. xx