Rebecca Milne

Final entry for my diagnosis story.

The pic says it all, and I couldn't not post on World MS Day! Probably a fitting day to post the last part of my diagnosis story. I'll have one more shorter update tomorrow to wrap up the month. Alright so... the decision I made was to get a second opinion - not about the diagnosis, that seemed clear to me, but the recommendation to not have any treatment. It was also really important to me to see a Neurologist ongoing who specialises in MS. I spoke to my GP and she gave me a couple of options, and referred me to the one that I preferred. Well this Neurologist is excellent. When I first saw him, he hadn't actually had a chance to look at my scans (he said there were 60 documents sent to him to review about me!). He told me that normally two clear episodes are required for a MS diagnosis, but he would check my scans anyway. So he opened up my file and test results and he was like "yep - you have MS". It was that clear. This was also the first time I had seen my scans from the more powerful MRI machine. To say this was confronting, is to say the least. I have multiple lesions throughout my brain and spinal cord. When I say multiple, I mean I couldn't even tell you how many there are. Even the Neurologist said that looking at my scans, and looking at me if he didn't know the scans were mine he wouldn't think that this was the same person. When I asked him about treatment, he said for someone with MS the threshold to put them on treatment is very low and yes he would recommend it. It was just a matter of what treatment I would go on. The gold standard as he told me is the Tysabri infusions which I already posted about, we just needed to check that I could go on that first. I still see this doctor today, and he has been really great. He is a little awkward when he speaks, super knowledgeable and he does tend to ramble. I like that though, I find him really relatable as I'm known to go off on tangents myself! So that is pretty much the story of my diagnosis. For now I'm keeping up my infusions, and I have to have a full brain and spine MRI once a year which takes about an hour. Since being diagnosed I've had no new lesions appear, and no active lesions so I'm hoping that will continue for a long time and I'll remain stable. See you for the last post tomorrow ☺️

Not quite finished!

I'm finished! Well, not quite. Today I completed my 50K goal but there's still a few days left of the month so I will do a few more of course! The days following my diagnosis I didn't tell many people... I told my mum, and I told my work (more so that they could understand I was dealing with something). I was also thinking about the appointment and how the specialist had not recommended treatment for me. Now I didn't know a lot about treatments, but I did know that treatments were available that would delay disease progression and I definitely didn't want to just sit on that and go along with the advice without getting a second opinion - after all, it had been over 10 years since it first started appearing and as far as I was concerned I was therefore at least 10 years behind, treatment wise. Also, as wonderful as this specialist was I also knew that MS wasn't his specially, and I wanted the opinion of someone who does specialise in this. I also wanted to talk to someone who understood to some degree what I was going through. So one day I called up a friend who had mentioned she has MS before and I asked her if she would mind talking about it because I had just been diagnosed. She said "welcome to the club" and we had a long chat about everything. It was a really valuable conversation for me and from this I made two decisions. 1. It was time to let the rest of my family know and 2. I definitely wanted a second opinion with regard to a way forward and my eligibility for treatment.

My diagnosis

I didn't take a picture for you today, again, so I thought I would share this picture from January 2021 while Looch and I went on a walk in the Daintree. This was the day before I was diagnosed with MS. Because I was so sure I wasn't going to get diagnosed, I arranged my appointment with the Neurologist to happen while we were on holidays to Port Douglas via telehealth. I thought yep that's fine. The telehealth was early-ish in the morning and Looch was still sleeping so I took my phone out onto the balcony at the hotel for the appointment. The Neurologist told me that the MRI had shown multiple lesions in my brain, cervical and thoracic spine (the first machine didn't pick up on the ones in my neck and hadn't scanned lower than that). He went on to say that the lumbar puncture results were indicative of MS as well and it was a confirmed diagnosis. He told me that I've had MS for "a long time" and that the episode with my numb feet was likely my first episode. I can't recall much else from this appointment. I remember him telling me that because I'm so well and symptom free and have been for a while, he didn't recommend any treatment as there could be issues with side effects. He asked me if I was doing well (other than the news he just gave me) and I said "yeah, I went on a hike just yesterday". He told me I would need regular MRIs to monitor things but I wouldn't need to repeat the lumbar puncture. So I don't remember being overly upset after the appointment. I remember being more concerned about the poor girl who's dog went missing on the Spirit of Tasmania a few nights earlier (heck, I am still concerned about that I hope she is doing OK). I also remember thinking that as I am symptom free, for as long as I am then maybe eventually I would just stop thinking about it and almost forget that I have it in a way and carry on as normal. But that's not really the reality. I think about my MS every day. Not all day, but every day. It's part of who I am. I'm not upset about it (usually) but yeah I definitely think about it. I definitely worry sometimes about the future as well. But it doesn't consume me. Well you probably have already figured out this isn't the end of my story - remember the doctor has said no treatment was recommended by him. I wasn't so sure about that part. This journey definitely does not end here. See you next time!

Progress

Hi all, I didn't take any photos today so I thought I would share a screen shot of my progress. I now have a little over 5km to go to reach my goal, so I'm pretty happy about that. The fund-raising has been something else... I am completely blown away by the support I have received. Thank you to everyone who has donated - if you haven't heard from me already, I'll be reaching out to you to personally thank you for your support. I wanted to also acknowledge the moral support - whether you commented on my posts, or reached out privately or even just reacted to my posts I've really appreciated it. A fair few people were surprised at the news of my diagnosis. It's never been a secret but until I had something like this to say about it I felt weird about bringing it up randomly or making a post about it. I made a post after Christina Applegate was diagnosed (same year as me) but I felt self concious and deleted it. Anyway I digress because I promised to tell you about my lumbar puncture. When they test you for this in relation to MS, they are looking for higher than normal levels of white blood cells or antibodies in the spinal fluid. For me, this along with the location of my lesions was the confirmation for the diagnosis - but this is jumping ahead. You will remember that the Neurologist told me that he didn't think I had MS but he had to check. Well, I didn't think I had it either. Despite the fear I had in 2009 that I had it, I had really moved on from then with no symptoms so I agreed with the doctor. The test is supposedly pretty standard - sounds scarier than it is. They take your spinal fluid under local anaesthetic using a CT machine for guidance, then afterwards you just have to lay flat for 3 hours otherwise you can get a severe migraine. But the day of the test, I woke up with a migraine, which pretty much made this day hell for me because I was fasting and not sure if I could take my dissolvable medication. I presumed not so I didn't even ask and suffered all day with it. You're not supposed to feel the test due to the local anaesthetic, but without going into too many gory details I definitely experienced nerve pain throughout. Afterwards it seemed like I was wheeled all around the hospital as they had nowhere to put me for my 3 hour recovery. They ended up putting me up in a ward when I felt like I spent most of the remainder of the day explaining to various hopsital staff that I wasn't staying the night, I was meant to be discharged in a couple of hours. I just wanted so badly to go home and I wouldn't even entertain the idea of staying overnight. The nurse who was in charge of monitoring me every 30 mins/1 hour was an interesting lady. She would write my vitals on her hand and sometimes she forgot to do that and she would ask me to repeat my temperature back to her so she could record it. They served me lunch and I ate some fruit and jelly and promptly threw it up on the tray. I had tried to buzz her to get a bag or bucket or something because I couldn't move really but she didn't make it to me in time. So she came in and told me off for eating what I did - apparently I should have eaten the icecream. I said "well at least I didn't eat the pie...". At one point during the day she asked me what I was there for and I told her. I remember her saying I was pretty calm for someone being tested for MS and I remember telling her I was calm "because I don't think I have MS". The 3 hours was closer to 4 or 5. Looch was meant to pick me up, due to Covid he wasn't allowed to wait with me, but it took so long and he had to work. His parents then came to pick me up with no notice... I hadn't told my mum because I didn't want to worry her. Anyway, I came home and I slept off my migraine. The next day I was fine but my back was sore for a few days after. So yeah, the "simple test" ended up being quite the ordeal for me but the silver lining is because the results were so clearly indicative of an MS diagnosis I never have to do it again. Thanks for reading!!

Iinfusion time!

Once again I am behind in my posts telling my MS story... so I'm going to have to post more frequently otherwise I won't finish it by the end of May! I'm taking a pause from the diagnosis journey to talk about something else, because this part came around Friday just gone and as you can see I took this super flatteing selfie that I just had to share with everyone.😘 Friday was my scheduled treatment for my MS. I get infusions every 4 weeks with a medicine called Tysabri. My Neurologist tells me that it's pretty much the gold standard currently for MS treatment, so I know I'm really making sure I'm doing the best I can for my health and delaying the progression of this disease as much as possible. The only things they need to make sure for me to keep having the Tysabri infusions are that I don't react/have any allergies to the treatment and also that I have to test negative to a virus named the "John Cunningham" virus, or JCV. This is a common virus that doesn't cause problems in most people. On Tysabri infusions though if you've had JCV you can have really dangerous neurological reactions. So every six months they test me for JCV and send a sample of my blood away to a lab in Denmark. The first time they tested me for it (around July or August 2021) I thought that was really wild - Melbourne was in yet another lockdown and international travel seemed very far away yet here was some part of me travelling all the way to Denmark! Well needless to say I was JCV negative (and have continued to be so far), so I was able to commence Tysabri infusions in September 2021. It's crazy to think that was over 2 years ago now. When they start you on the infusions the process takes a couple of hours to make sure you can tolerate the infusion. Then they can speed up the infusion a little bit each time so that it runs quicker with the "rapid" rate being 30 minutes. I remember being SO impatient to start the rapid rate, now here I am rapid rate infusion every time. I know most of the nurses now in the infusion centre. Some are nervous because my veins like to hide and they can remember struggling to get an IV line in... but most are amazing and it's usually not an issue. I just have to keep myself hydrated prior to my appointment and this seems to make it easier for the nurses. That's it for today, see you tomorrow ☺️

The next appointment.

Sometimes my daily walk is simply around the perimeter of the Zoo (not today though, I took this one a few days ago). It's about 1.8km around and is a pretty nice walk. This shot is from across the front of the Zoo looking toward the main gate. This will be a bit of a shorter post, because it's not a long story but it is about the next step in my MS journey. So, as I wrote last time I was referred on to a Neurologist to investigate further into these brain lesions that were "consistent with MS". The Neurologist I saw was absolutely lovely. We spoke about the MRI, my history of weird symptoms, and my headaches. Well immediately he diagnosed my headaches as migraines, and prescribed me something for them to take when they happen. So that was amazing, and I still take those to this day when I get them. Regarding the suspected MS, he did all the usual checks and he told me "I don't think you have MS, the lesions could be due to a number of other reasons including your migraines. But I would like to run some tests to be sure". He told me the reason why he suspected it wasn't MS was due to how well I appeared, and the length of time since any of the symptoms. The tests he sent me for were another MRI, on a more powerful machine (I had no idea, I thought they were all the same!), this time I would have my brain, neck and upper spine scanned. The other test he sent me for was a lumbar puncture (where they take fluid from your spine). So in December 2020 just before Christmas I had both of these tests. The MRI was fine, but the lumbar puncture for me was something else and warrants a whole post of it's own. Until then...

Well, this was not expected.

Well hello. I am sorry for taking my time to do this next post. Truthfully I have been pre-occupied with Miss Aurora (who I now refer to as our little Free Loader) who has been keeping me up most nights with her complaints to the manager (me) about the cuisine on offer. The MS fatigue is no joke, but added sleep deprivation just amplifies it. So my focus has been on sticking to the challenge and my posts have dropped off. I still have a lot to say before the end of the month so I have re-jigged my post schedule. First things first though, I made it to the half way point!🎉 Alright so... for most of my adult life I get these awful headaches. I never knew if they were tension headaches, or migraines. I used to get them every so often, so not too frequent, and when I could buy neurofen plus over the counter that was how I treated them. But then they went to prescription, and my GP refused to prescribe them to me (despite the infrequency I was taking them). Anyway literally no over the counter pain relief touches these headaches... so I got by somehow, but in late 2020 I decided I wanted to get to the bottom of them - get a proper diagnosis and a plan to manage moving forward. My GP referred me to a specialist in sports medicine, mainly because it could be posture related and at this clinic they would bulk bill an MRI if I needed one. So when I saw this doctor sure enough, he suspected my headaches were posture/neck related and he said just to rule out anything suspicious he would order a brain and cervical spine MRI. You can probably guess what this found. Yep, multiple lesions "consistent with Multiple Sclerosis". Quite the shock as this was now 6 years post any weird symptoms and it was the furthest thing from my mind. So on I was referred to another Neurologist to investigate further. I kind of left that appointment kind of shook. I don't remember much else except I felt sorry for this doctor, I wouldn't imagine in his field he would be telling that many people they might have MS. It felt surreal though, like surely it must be something else... well it wasn't, and you guessed it that is a story for another day. But there's more to tell before I get to that part. Thanks for reading!

Trust yourself

OK... I wanted to post this yesterday but because of reasons I found myself with no time. Anyway, today on my lunch break I took my walk on the Moonee Ponds Creek Trail, which is my go-to place to walk when I'm working from home like I was today (and also on weekends). Melbourne has really been turning on the weather of late! So this part of my story doesn't involve doctors or appointments (plenty more of that to come, trust me). Well the thing is, I personally know 6 other women with MS. 6. Is it just me, or is that a lot to know just by circumstance? Too many I think. Every one experiences this disease differently as well. Just yesterday I had my 6 monthly appointment with my Neurologist and I rattled off a bunch of weird stuff that happened since I last saw him asking if any of it had any significance or were due to my MS, because I don't have any idea what is next in store for me. OK so I did sneak a Doctors appointment into my story... oops. Anyway I think it was sometime between after my first episode but before the 2014 possible episode, I ran into an old friend at Cherry Bar. It was great to see her, we had a good chat about old times and she told me she had been diagnosed with MS. I remember telling her that I am so sorry to hear about it and she assured me that she is well and getting good treatment. I told her about my experience with my numb feet, and that I was worried it was MS but according to one doctor I saw wasn't. She told me that if I'm not sure, I should pursue it further... if I want to. She wasn't judgey or bossy at all, but she encouraged me. But the thing was, I didn't want to have MS... and I thought I was just dramatising my symptoms, so I thanked her for that and we caught up some more but I didn't do anything with her advice. And I guess I'm telling this story because that is the exact advice I would give someone else today - if you're not sure, trust yourself and make those doctors hear you. I hope everyone enjoys the rest of their week! The weekend is almost here 😊

Second episode?

Today I got my walking in with my regular Saturday volunteering for the Riding for the Disabled, Oaklands. This little man's name is Champ who has featured on my page before as he and Thidwick used to be besties. Champ is an awesome little pony for the riders, though he did try to bite me a number of times today and drag me into the dam. So it's time for me to tell another part of my MS story and this time I'll post about what I think was my second episode (though this one is unconfirmed). MS is a funny thing, every little weird thing that happens to me makes me wonder if it's a symptom of that or maybe something else now. But I digress. In 2014 I took a little break from Zookeeping to do some project work for two weeks and the project was desk based. After two days of sitting at a computer, I woke up with weird pain in my thumb, my hand looked weird like it was cramped up, and I had numbness down my face and neck on the same side. This time I sort of presumed I'd pinched a nerve or something just sitting at a desk all day. But as I usually would those days I decided it was probably a good idea to see my GP. Well, she panicked. My GP tended to go that way. She told me to go straight to the emergency room as I may have had a stroke 😳. She even made me leave my car at the clinic. So off I went. I thankfully didn't wait that long in the ER before I was triaged and I then saw a hospital Neurologist. He did no tests other than the ones where they check reflexes and eye movements etc. He said I hadn't had a stroke. But he couldn't explain my symptoms. I told him that my GP had been concerned about this high ANA and he simply said "we can't treat a blood test result. We would need to know what your diagnosis is". Well, fair enough I thought and I walked back to the clinic to collect my car. My GP ended up asking me what I wanted to do about my weird symptoms and high ANA. She gave me two options, I can't remember the first but the second doctor she told me "would look outside the box" and I distinctly remember saying to her "Yes send me to Dr House please". So "Dr House" was a Haemotologist and honestly he was one of the best specialists I saw. He looked at my bloods and ran a bunch of others and he told me that my high ANA was a "form of mild lupus". He said not full blown lupus, and that it explained my fatigue. So he put me on Plaquenil a.k.a. Hydroxychloroquine - you know, the drug Trump as taking to ward off COVID causing a shortage even in Australia 🙄. I did feel better or less fatigued on the Plaquenil to be honest, and it did reduce my ANA... but it was a bit of a vague diagnosis and my GP was not impressed. I can't remember when the face numbess and weird hand thing went away... I think this one was maybe less than a week. It was so fleeting it's why I'm not really sure if it counted. Since then I've had no weird symptoms, or at least not like this, so I blissfully went about my life totally unaware for another 6 years. Thanks for reading!

Sharing my ms story - first episode.

The May 50K I'm lucky enough that my job covers all four of our amazing zoos and today I got to spend it at Healesville Santuary, where I snuck in a walk on my break visiting some old friends, and some new ones (and dinos!). I thought throughout the month I would share some of my walking locations and also share my MS story. Not everyone knows all of this, at least not in the detail I plan on sharing this month. So my first episode we now know was in 2009. I started to experience some numbness in both of my feet. It was a weird feeling - like my feet weren't completely numb and I could walk OK but it was like a pins and needles type feeling or like the skin was asleep or something. To this day I still can't describe it... the closest I could get is when you run barefoot on concrete and your feet are slapping on the ground (like you might when you're a kid at the pool or something). It kind of felt like the sensation after that. My GP started by sending me for blood tests, and one of the tests she did showed a spike ANA antigen which can be an indicator of systemic autoimmune disease. So something like lupus or rheumatoid arthritis. But not MS. This is significant to my story because this became the focus of this and future issues, like they were just looking in the wrong place. I saw a bunch of doctors, rheumatologists mostly, Ihad an MRI on my lower back (to check for disc problems) and nerve conduction studies. But no one could figure out what was going on. Then I got numbness in my finger tips. That's when I started to think it might be MS. I was really worried about this, at that age (29) I was really worried about what that might mean for me - for my job, my life... I was pretty scared. So that's when I saw the first Neurologist. He told me "every young woman that comes to my office thinks they might have MS and usually they don't". He then went on to tell me that the parts of my brain that would affect my hands and also my feet are totally different and this would make MS unlikely (but not if you have multiple lesions, and that part of my story is for another day). Anyway he reassured me that I don't have MS but to "come back if you experience something more profound". Well I was happy enough. Still no idea what was wrong with me but a Neurologist had told me I didn't have MS so that made me glad - I figured I could manage whatever else it is. Eventually the numbess went away, I think it took a couple of months. It came back for a while and went away again but that was the last of it for 7 years, until what I believe was my second episode...