Monday, March 25, 2013

Pre Diagnosis Diary Excerpts Part 2

Here are my diary entries leading up to my diagnosis with MS in late 2003.  It is a continuance of my last post.  I'm not posting every entry or even full entries, because that would probably be as boring as batsh*t to you and I'd like to keep a skerrick of privacy for myself.  I would just like to let others who are going through the process of being diagnosed know, they are not alone.  All of us with MS have been where you are standing right now... on the precipice of a life changing event over which you have no control.

25th Nov 2003, "Initial consultation and physical examination could not confirm MS today. Dr T (neurologist) does not know what is causing my problems, thus he is sending me for MRI tests.  For some reason I feel better after seeing Dr T.  He said he see 3-4 people a day like me.  He called to check my abnormal ANA tests and was going to request further tests on my blood, by Dr A (general practioner) had already done so.  I'm not even sure what the tests name is or even what they indicate, but both were negative.  Dr T seemed pleased.  I was petrified this morning and cried in Dr T's office.  He spoke about my anxiety and has gotten me booked in for MRIs asap."

"Ryan and I have spoken about my negative attitude.  I am going to try and re-frame things with a more positive spin."

26th Nov 2003, “I can't tell what is normal sensation and what isn't.  I feel like I am doing everything right and nothing is changing."

"I have sort of pins and needles in my lower back now.  Am I making these things up - am I imagining them?  I have the MRIs tomorrow morning.  Should be an experience!  I'm not nervous about doing the MRI, just what they may reveal.  Maybe I am just noticing every little sensation now."

1st Dec 2003, "The results of my MRIs came in.  Dr T says that I don't have MS.  I do have some white spots (lesions) in my brain scans; however they are in the wrong spots for MS.  So my symptoms and slightly abnormal ANA tests are unexplained.  Dr T stated he was worried prior to the MRIs, but that after he is not.  He can't 100% rule out MS because he isn't God.  He wants to see me again in 3 to 6 months for a check-up.  I am very tired and have been in dispute with Ryan about the outcome.  He is very optimistic and hears through optimistic filters.  I am less optimistic and hear through my less optimistic filters.  I am seeing my psych on Friday."

2nd Dec 2003, "Feeling pretty down. I have these symptoms and no cause.  I don't feel like the neurologist was straight with me. Down."

8th Dec 2003, "I have MS.  My cervical MRIs showed lesions.  We are waiting on the cerebrospinal fluid (CSF) to fully diagnose."

This was my list of questions for Dr T.
1. What can I do to reduce the chance of MS relapses?
2. The role of stress?
3. Is there anything I could have done not to get MS?
4. I have no family history of MS; where did it come from?
5. Does my sister have an elevated chance of MS?
6. What are the chances do any of my future children have of getting MS?
7. Does heat worsen the symptoms or does it make relapses happen?
8. Is it better to have lesions in the neck than brain?
9. Any comments on diet helping MS?
10. Will MS make me susceptible to other diseases?
11. Are there any known triggers for relapses?
12. Weakness of limbs, incontinence, vision issues, please explain.
13. How expensive are the drugs used to treat MS?
14. Does relapse-remitting MS necessarily turn into secondary MS later in life?
15. Will I end up in a wheelchair?
16. Do we need to do evoked potentials?

What happened around this time is that Dr T was concerned about my cervical MRIs and pulled me into hospital for a lumbar puncture (or if you want the terrifying term, a spinal tap!)  The lumbar puncture was a horrible experience for me.  But along with positive MRIs, positive CFS markers for MS could give me a definitive diagnosis.  After a lumbar puncture you have to lay flat for 8 hours and I'm not sure if Dr T was concerned about my mental wellbeing or if he thought CSF test would be positive (or both) but my hospital room was booked for an overnighter.

I remember Dr T coming in, sitting on the edge of my bed and telling me I had MS.  I immediately broke down.  I'm not sure how he actually left the room because I was inconsolable.  He told the nurse to give me a sedative to calm me down and to help me sleep.  Ryan came in and was very supportive; we just hugged for an eternity.  I also called my close friend, Sandy.  She had given me my first book by George Jelinek, as she knew another woman with MS.  She also came in to see me.

In those early days, I'm not sure what I would have done if I didn’t have Sandy's understanding.  Anxiety, being terrified and devastated on top of knowledge about MS and maybe my complicated thinking style (complicated - so technical!!) are hard for anybody (including me and) including anyone who is also trying to come to terms with their loved ones MS diagnosis.  Sandy, luckily for me was (is) a good friend and an experienced counsellor/psychotherapist, who I respect and trusted with my wobbly mental health.  I think anyone in my position could do with a "Sandy" in their life.  I felt comfortable allowing her to see the entirety of my grief, rather than holding some in just in case she might not be able to cope with the um, depth and utter despair of it.

Ryan was amazing and supportive.  Never once did I fear he would run as fast as he could in the other direction, although I would have come to terms with it (and totally understood) if he had.  My family tried their hardest, although they knew little about MS, other than stereotypes.  My mum blamed herself for it, as mothers do I guess.  "What did I do wrong, what could I have done differently?”  I was grateful for being able to go to home to my mum and dad's house and lay on a bed and sleep as long as I needed to.  They looked after me well during this time. 

I told a selected group of close friends about my diagnosis rather than broadcast it willy nilly.   I think I did this because I didn't know how my MS would turn out. I told friends who I thought would not leave me in my time of need and who would ask me questions... I couldn't think of anything worse than telling someone and then having days and weeks of silence while they worked stuff out without letting me know how it was going.  After the first week, I wanted to talk to my close friends about it.  I don't think I could do it without crying though.  That didn't come for years!

At the time I was working as a advocate for vulnerable men released from prison.  I obviously didn't tell them about it, but I did tell my employers.  They were incredibly supportive and told me to take off as much time as I needed.  After a couple of weeks though, I was done being at home contemplating MS and my navel.

I was also seeing a psychologist.  I have to tell you, even though I had truckloads of support I still needed my psychologist to unload and work through my grief.  When people are diagnosed with a chronic or life threatening illness they go through a grieving process akin to when a close friend or relative dies... because their future as you perceived it has died with diagnosis.  Whenever I hear or know of someone who is diagnosed with a chronic or life threatening disease I always ask if they are seeing a psychologist.  I believe you need to get through the grieving process to move on with your life.  This is not to say the process is easy or you don't back and forth through the phases, but a psychologist can make the process tidier for you. Not necessarily shorter, but less time being stuck thus making it more manageable.  It is amazing how putting thoughts into sentences can help.

After my original diagnosis, I was very unhappy with Dr T way of dealing with me.  He treated me like I was a fragile, delicate petal in a way, perhaps because he was concerned about my mental state.  Those of you who know me, know this is not me.  However what I needed from him was to be told straight.  I talked to him about my concerns and was pointed in the direction of Prof K.  I love my current neurologist – weird right?  I’ve had him going on ten years now and I don’t see that we will be parting ways anytime soon.  He doesn’t sugar coat and he is comfortable with my fright!  He is knowledgeable, like a walking talking encyclopaedia.  I can ask him something and he will tell me the answer/s past and current in a way that fits with my level of understanding of MS.  I used to think he was quite eccentric, but not now and I trust him with my brain.  He would not be for everyone, but I do recommend him to everyone because I think he is the best in WA.  It is so important be happy with and trust your neurologist.  There is totally no harm in shopping around to find the right fit... you would for jeans so why not your neurologist? 

This final thing I want to write about in this post and my original purpose for putting my experiences out there in the cosmos.  Sandy came into my hospital room and I cried... a lot.  But I remember saying, even though I was crying and couldn't see my immediate way ahead, I knew everything was going to be alright.

That is a bit hard to explain.  I just had a strong sense the grief would pass and I would be ok.  I didn't know what the future held, far from it.  Every night for at least two years I would go to bed thinking I would wake up paralysed and needing a wheelchair.  I had hope this wouldn't happen and a cure would be found.  But I just knew everything would return to its place or its new place and I could cope with what life threw at me.  Mostly I go through my life thinking like this and I think that if you are diagnosed with an illness or even if you are reading this and you are all squeaky clean and peachy you should be endeavouring to cultivate this way of thinking.  You can cope; you just don't know it yet.  My good friend Jac told me, God wouldn't give you something you couldn't cope with.  I'm not really religious, but I like the sound of this, although it takes the power of coping away from you somewhat.  My good friend Travis once told me in reference to a boyfriend I broke up with, one day you will wake up and he won't be the first thing you think of.  I applied this to my MS.  I really believed these things and they worked for me in my time of need for great personal strength.  Find what it is for you and use it.

Well that is it.  I hope you enjoyed reading. Good luck if you are awaiting a diagnosis or have just been diagnosed. For all, work on those coping skills, you never know when they will come in handy.


PS I am grateful for and would like to thank the people mentioned in this post.  Ryan, Sandy, Jac, Trav, my family and friends, who I may not have mentioned but you know who you are and also, my psych at the time, Christina, Dr T, Dr A and Prof K.