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

Six Month Tysabri Results - Part One.

Hi there, long time no see.  Sorry it's been a long break.  No excuses, I am just slack!

Three  weeks ago I had an MRI because I have had six infusions of Tysabri.  Six infusions already - crazy town!!  Time goes so fast.  I have no problems with MRIs.  I’ve lost count of how many MRIs I’ve had – all I know is I have a pile of films that I have no idea what to do with.  Maybe one day I can have my own MRI brain and spinal cord art exhibition!  My kids could illustrate them.  Hmmm maybe I’ll wait until they are older, so they will know what they are actually drawing on and will have developed more of a sense of humour.  Anyways, I’m not sure if I am allowed to ditch them, I’ll have to ask my neuro in six months, but until then they’ll continue to keep the dust bunnies company under my bed.

As I mentioned I’m not concerned about MRIs.  In fact I informed the tech that I was going to get a half hour nap in while the MRI machine was doing its thing… He had the last laugh informing me the scan would take fifteen minutes with a break to inject the gadolinium contrast.  I would have to be good to get that short a nap in, which I am not.  So instead I relaxed and pondered what my results might hold. 

Six months earlier, when prescribing me Tysabri, my neurologist was adamant there would be no new disease activity; no new lesions, no new symptoms and definitely NO going downhill.  My previous MRI (when I was still the drug formerly known as “Mr C” or for those new readers, Copaxone) had shown new inflammation and activity – 5 new lesions, the most I had ever had in a six month period.  This indicated that even though I was injecting my wonderful (not!) meds daily,  my MS was active and more so than ever.   So even though Tysabri was touted as a wonder drug for halting MS in its tracks, I couldn’t get my hopes up.  What if it just didn’t work for me? 

In the meantime, I had another infusion of Tysabri.  I have to tell you there are absolutely worse things than sitting about for three hours watching a movie, texting friends or reading a book. 

Although at my last infusion I did meet an amazing woman.  Her name is Abby and she was infusing  in the bed next to mine.  She has stomach cancer.  Her medication options have come to an end as nothing was working anymore and she told me about all the alternative options she had tried.  I felt incredibly sad and helpless for her; her children are the same age as mine and she had been given just three short weeks.  My kids were with me too, for some of the time, being all boisterous and cute (or annoying depending on who you are), so I felt pretty uncomfortable.  I didn’t know what to say.  She was having a bad day – a bit teary and down.  Hell, if I was given three weeks I would be crying all day, every day.  She asked me how I was coping coming into hospital once a month, asked about how inconvenient it was, whether my medication was painful and how it was knowing that I may not have a normal life span.  This brave and incredible woman has three weeks to live and she is asking me these questions… It was humbling, humbling, humbling.  I asked her the same questions, after deciding it was more respectful to ask her outright what I wanted to know about her condition.

I told her that my greatest fear is my children developing MS.

At the end of my infusion all I could do was hug Abby.  I couldn’t make her cancer disappear, not even a little bit.  I told her would see her in four weeks’ time.   She didn’t look like she was just three weeks away from dying, so in my mind it is really hard to believe she won’t be there in four weeks.  She was hopeful, saying she’d outlived one time limit already.  I am so dismayed about her situation and how ungrateful I have been with my own life that words can’t describe how much I want her to be at the centre in four weeks. 

A week later I went into my local SKG to ask for my MRI report.  Although my family were in the car I tucked the envelope into my bag and tried to forget about how heavy it was on my shoulder.  What if the Tysabri wasn’t working, what if I had to change my medication again, what if… so many what if’s.

At home I put the envelope on the bench and tried to ignore it.  But it eventually its calling wore me down.  I am a need to know person.   I don’t do well with doubt and not knowing where my health is concerned, especially when my uncertainty can be quelled with a report sitting on my bench.  So I sat down and opened the envelope.

Ha… and that’s it for now.   Got to pick up my little darling from day care.  Check back in a few days and I’ll tell you more about what happened!!

(Kind of Deconstructed) Raw Apple Pie And Tysabri Infusion No. 5

So here is my raw apple pie recipe I promised last time I posted... well it's not "mine" per say; I found it on the net here at The Raw Foods Witch, so thank you Raw Foods Witch, I feel appropriately bewitched and enlightened by your recipe.  There is also another great page for making raw fruit pies here Steve Pavlina.com if anyone catches the bug for making delicious raw fruit pies.

I posted a photo of my first raw apple pie on Facebook and a cheffy friend of mine suggested that it was a "deconstructed" apple pie.  How very buzz-word of him and he would know of course because he is a chef, but I needed to look up exactly what that meant.  I like this definition best, deconstructed dishes take the foods that are normally combined in the dish, change their forms, and then plate them together in a different way. It's not just about taking the dish apart, but putting its elements back together.  So this raw apple pie is only kind of deconstructed, as it replaces the pastry with nuts, which isn't in the definition.  Nuts are a squillion times better for you anyways.  Check it for yourself.

Raw Apple Pie

For the crust, you will need:

2 cups of brazil and pecan nuts
1 cup of fresh pitted dates (these can be substituted with dried apricots, figs or raisins etc)
1/2 teaspoon of cardamom
1/4 teaspoon of nutmeg
A pinch of sea salt

Place the nuts in a food processor and process until you have small crumbs.  Add in the dates and spices and process until the mixture is well combined and in very small crumbs.  (I like to process my nut mix until it is dough like, because it is easy to mould, but you might like yours more crumbly and if this is so, process less - experiment!)  Have a taste now to check your spice levels, I love cardamom so I usually add more.  Press the nut mixture into a 22cm diameter pie tin and place in freezer until firm.

For the filling, you will need:

6 large apples (if not large add extra)
2 tablespoons of lemon juice, and a little extra
1 cup of fresh dates

Peel and slice 4 of the apples and put them in a bowl with some lemon juice to stop the apples going brown.  Cut up the remaining 2 apples and place them into the food processor with the 2 tablespoons of lemon juice and the dates.  Process until smooth.  Combine the mixture with the sliced apples.

Remove your pie crust from the freezer and arrange your filling evenly in it.  Eat immediately or refrigerate.  Your raw deconstructed apple pie will keep for a few days in the fridge.  However it is so yummy you will want to eat it all at once.  My latest Japanese visitor insisted on eating it for breakfast, even though it doesn't seem all that breakfasty to me, but who am I to stand in her way... It's pretty darn healthy, even though the prunes add a whole lot of sugar; all the more reason to eat it for breakfast - all day to use the energy up.

Anyways moving right along.  I was infused with Tysabri yesterday.  I had a shocking morning in preparation.  I forgot my water bottle and head phones.  In weighing my options, I didn't think anyone on the ward would appreciate me watching a movie without head phones.  I realised I was sans head phones as I was driving past a friend's home.  I gave her a call hoping she would be home, but she was almost at school with her kids.  My heart sank, but then she said just come by and pick up my keys, go in get the head phones and drop the keys back.  It was a very streamlined event actually and only set me back by 15 minutes.  Thanks so much Jacquie.

By the time I got to the hospital I really needed a coffee, so that set me back another 10 minutes.  After I filled out all the paperwork and booked my appointment for February, I noted on the receptionist's watch that it was 9.30, half an hour past my slot.  I expected to be waiting forever.  I perused the magazines and rather than reading old news decided I would give in to the lure of Christian.  I got my book out and was shocked to be called straight into the ward.  I think I need to be half an hour late more often.

I was seated and the elderly gent sitting across from me was surrounded by 4 nurses.  He didn't look like he was having fun at all.  The nurse who was attending to me stated, rather than asked, if I would mind if the trainee nurses could assist.  I was like, oh yeah sure, but you know I have difficult veins, hoping it was loud enough that they would be put off.  The reply was, Merrill is the best person for putting cannulas into veins, you are in good hands.  Yeah right this was the women who stabbed a nerve in front of my kiddies last time.

The 3 trainee nurses wandered over and I decided to be chirpy and generous.  You have to start learning somewhere right?  Merrill followed with no intention of doing the cannula herself.  Leisha put her hand up and said she would like to have a go.  Everyone examined my veins and Merrill couldn't understand why no one had successfully put a cannula in my hand, as they certainly looked good.  There was a little bit of banter, but then I acquiesced, sure have a go why not!  Merrill started to give instructions and I thought this is a little anxiety inducing, put on your head phones and start your movie.  Impatient me said, oh don't be ridiculous doing that will just delay what is going to happen, just let them get on with it already.

All merit to Leisha, she followed Merrill’s instruction, ignored my negativity about hand cannulation and succeeded on her first attempt at putting the cannula into my hand.  No one else has ever done that, I usually get pricked at least twice and it the hand too, woo hoo!  The down side was that it was horrible listening to Merrill's instruction and more painful than any of the other places I have had the cannula inserted.  I was so glad Lesiha told me after the fact that I was her second ever cannulation!!

I remembered yesterday that no one, who is a nurse, wants to intentionally hurt you (unless you are truly awful I guess!)  They are doing their job and that job in my case, is inserting a cannula into my vein so I can have the medication I have of my own free will consented to have.  What they know about MS now is that early treatment is imperative for reducing damage, as damage is occurring regardless of whether there is any activity on your MRI or not... so you probably need some form of medication from diagnosis.  I find it tedious that some people carry on like pork chops about the medication they have consented to have to reduce damage and improve their future quality of life.  If you are not happy with your medication - research it, talk to an informed person about it, seek alternatives, get a second opinion OR learn to accept it.  I figure you can make life easy for yourself and get on with it, or dilly dally around, annoying the nurses, your neurologist or your doctor, lengthening the process and making life tougher for yourself.   Ok off my soap box.

Enjoy the apple pie!

Tysabri and Thesis, Both Begin with T.

Canonymous" has given me the little push I needed to get a new post written.  In case you are wondering, check out the comment on my last post.  Thanks Canonymous!

So what has happened in the months since I last posted.  Well I had a bit of a melt down and decided to defer handing in my thesis.  I threw all my balls in the air, so to speak and had family or uni to left drop... and well it seemed rather impractical to drop my family so I decided on my thesis.

I think what happened was in the beginning, my research proposal went back and forth with ethics, putting me several weeks behind.  Then I collected too much data (albeit rather spectacularly); I interviewed too many teens and then had to transcribe too many 20-45 minutes interviews, which put me even further behind.  Then I started getting a bit manic and having trouble sleeping.  Then I started to get concerned my stress levels would adversely affect my new wonder drug, Tysabri's chances of working in the manner that I would like it to work.  That is... halting all new lesions 100 percent!!!  Then I checked my thesis plan and realised I couldn't really write up a first draft, including my analysis and lit review in one month even if had no family and no distractions... got all woozy, walked to school to pick up my daughter in shock, told some friends I thought I needed to defer and then came home and emailed my husband and supervisors.

The general consensus was divided in two, as it was in my head; think of your health and just get the blasted thing done.  The tipping point was my thoughts about Tysabri not working, which my neurologist later tells me, outrageous levels of stress should not have any implications on Tysabri's efficacy.  But just writing this now has highlighted the fact that MS could take my health and not return it.  Whereas what is another year in the great scheme of things?  If my health was stolen, I wouldn't (to varying degrees) be able to work anyway.

So anyways... Tysabri has been treating me well.  What I have noticed is that in the week after my infusion I have copious amounts of energy... well hmmm, copious??  Um, more than normal.  My normal.  That peters out to my normal again, which is not to fatigued levels, which is common in MS...  I am lucky on that front.

I have had a grand total of four infusions.  No one has been game to try inserting a cannula into my hands again, since the first infusion.  I try to drink two litres of water before my 9am appointments so  I have veins that are plump and ready to be penetrated, which on two occasions, since the first was successful, with only my last one not being successful.  It was a bit of a bugger actually, as it was during school holidays and my kids came to observe.  The nurse was showing a trainee nurse my veins and poked around for a bit in the same vein before I smiled sweetly, battered my lashes and said "ouch", when what I really meant was F**K that last move really F****N killed!!!  Of course I couldn't say any of that because Miss Six is allergic to needles... By allergic I mean, screams at the top of her lungs until blood vessels burst in her cheeks at the mere mention of a vaccination. Catastrophically allergic.  So ouch would have to do.  I added some cryptic explanation so Miss Six would not be able to translate it into, shitloads of pain.  The nurse kindly informed her trainee that perhaps she had hit a nerve, which is very painful and would now try a different location further up my arm!

What else you ask, have I been doing?  Well socialising with my family in a manner that is more than grunting, catching up on housework that is for sure (for procrastination purposes only), definitely not writing my thesis and having my hair cut short and lightened! (It's lighter now than the pic to the left).  I know I should be writing my thesis, but I have not even been writing my blog, which on the whole, is fun to write.  I have now broken the spell, so maybe I  can start writing my thesis again now.  It would have been due this Friday!  How incredibly horrific would it have been if I had deferred, but kept writing, only to have it all done by the due date.  Yeah well, DREAM ON sweetheart!

Since my last post I participated in something called Western Mudd Rush.  You can check out its page here... http://westernmuddrush.com/ The video on the home page is from the event I took part in this year.  It was good "dirty" fun and the team I was a part of and it’s camaraderie was the dog's bollocks!  

Ok.  Now I have a favour to ask.  During my infusions I have been watching funny movies on my iPad.  Several times people have asked me what I am watching because I am snickering so much.  I like to laugh in such a serious place... and I hope people get a kick out of me laughing and laugh at me laughing - surely it lightens the mood, right? (Or gives peeps the irrits).  The problem is I have run out of funny movies to watch.  Can you leave me some suggestions in the comments section please.  This will save me wasting time researching funny movies, instead of writing my thesis (ha)!

Oh and I have a little treat for you next post.  I am going to write about my raw apple pie, that some folks have asked after.  Cheers xx