Wondering About My Later Life Diagnosis

By msjujuro

1 min read

I found out in my fifties I had MS.

Doctors had confusing diagnoses for me and I am still learning about this disease. I am confused because they told me I would probably die from other natural causes and not MS. I was 52 at the time, now 20 years later I am thinking they may be wrong. I am losing control of many functions.

I can no longer shower by myself and my balance off. I notice my thinking is much slower and my speech is getting slower. I feel helpless and yet I try my best to exercise and keep up with a daily routine. I get infusions 2 times a year.

I am trying to seek a new Neurologist. I feel like there is something better for me out there.

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Lori FosterCommunity Admin
Hi <inline-mention username="Phillip PS" user-id="4562173"/>. It sounds like you have done a good job of surrounding yourself with support. I hope you eventually improve to a point where you feel more comfortable being out and about. Have you ever tried cooling products for those hot days? Here is an article about them that includes a link to a program that provides them for free: <a href='https://multiplesclerosis.net/living-with-ms/beat-the-heat-and-chill' target='_blank'>https://multiplesclerosis.net/living-with-ms/beat-the-heat-and-chill</a>. They can be a real lifesaver for people with MS in the worst of the heat. - Lori (Team Member)
Phillip PSMember
<inline-mention username="Lori Foster" user-id="4035613"/> Hi Lorry, I can walk a bit, say 100 meters, I don't know anymore because I find walking further a bit risky and damaging. What I think is that my lesions are worse than my MS and any amount of inflammation goes to create nerve impingement. I put it down to bad fluids. I am affected by re-existing issues (which I feel is typical) as I'm re-living past injuries that now have strange nerve sensations and paralysis. My reasoning is that I start off walking okay, I can potentially look like I'm moving without injury / disease and then drop foot, spasticity, whole limbs shut down, then incontinence and with heat I can potentially become fully paralysed, so I don't chance much with walking, though I'm on my feet in short spurts all day. I also work for a few hours and I don't mind heavy work. I have to rest up a LOT. I don't get much done so I don't get time to go out. I still have life plans and a business to reopen. I have to move to a single floor house. I would walk more except for my hip and troubles caused by wonky walking, which my physio is helping with, and you know... I see a time where I will gradually walk further, eat cleaner, socialise etc, and yet I have no idea what future I'm facing, which seems bleak when I'm stuck in bed all day, all week, all month. I have support workers, a carer, a gardener and now a cleaner which helps. The carer helps me with shopping and whatever project I've got on the go. I keep setting up a 4WD camping rig, but I already know things like the motorbike is too much to handle, even the fridge or battery and maybe setting up a tent will be very hard, but I bet you I'm far more worried than I should be. I lack motivation and yet I can keep fit if I'm smart about it, touch wood* MS is more of a 1.8 steps forward 1.6-1.9 steps back. A world of depleting gains, much like ageing in fast speed.
Lori FosterCommunity Admin
Hi <inline-mention username="Phillip PS" user-id="4562173"/>. I hope you find that your doctor will work with you in pursuing the kind of treatment you feel will be best for you. Are you able to get out and about at all, maybe with the help of a walker or a quad cane if balance and weakness are issues? Please keep up posted about your MRI results if you feel comfortable doing so. Thinking of you. - Lori (Team Member)
Phillip PSMember
<inline-mention username="kayleighhill" user-id="4019557"/> I don't know what the situation here is like, really. My neuro-physio has another patient at my hospital, with the same team, and she's not complaining and most of the people I speak to online are from Australian Facebook, MS groups and they all have better care, by far. Thanks for your concern. It is what it is, and speaks of a history of medical negligence that stems from my childhood. It's a repeating pattern for a reason, mostly becaue I'm impatient and opt to go it alone... Unfortunately that leads me to describe stories of battling with death and recovery from diseases too. They don't find me easy to believe and I am forced to just tell a bit of back story. The other problem is that I'm kinda fit. I'm 50 but was an athlete in my 40's and now I have no fat on me, I just have left over muscle - plus I spent years trying to beat MS with fitness, and it looks like I'm still a competative athlete to the non-athletetic doctors. So we have a strange relationship. I just had a new MRI done and they told me they will speak with me on the phone in a few weeks. In a month I have a face to face appointment which they will cancel. I talk about taking the wholistic route and they encourage me. They think that I don't think MS exists because I'm factoring it down to micobiome issues and parasites. I uderstand they don't believe in that, but they believe in not smoking or drinking because it has a massive impact, so they believe in cleansing parasites. It does help. It lifts brain fog and helps you maintain your balance, mentally and physically, so with that and the emotional boost, I'm on the right track. As for drugs, I argued that Ocravan was typically prescribed for people at my stage and they only offered a trial, if I fit the critera. This recent scan will decide that. I told them, great, but I still may say no, and I'd have to look into it. I really hate this system I feel boxed in and forced to comply, and most of all, I feel like a beggar... most of my help comes from alternative sources. Currently I'm learning about essential oils and my strict diet is amazing but I must have more fun, because I'm bored at home alone all the time and I'm drinking too much which goes against all my plans. I have to gain a better lifestyle, where I have some fun and aren't so scared of the future.
kayleighhillCommunity Admin
<inline-mention username="Phillip PS" user-id="4562173"/> Thank you so much for sharing this. I'm so sorry that it's taking so long to see a doctor. I can't imagine how frustrating that must be and on top of it all, not get any recs for treatments. I'm not familiar with Australia's healthcare and had to look up what NDIS support was. That being said, if you don't mind me asking, not being very familiar, are you able to request a neuro or specialist or do you need to see a specific physician provided by the NDIS? Spasticity, pain, and cramping can all be very difficult to have to experience. I can't imagine the added frustrating of the medical system as you describe. Please know Phillip, you have all of the support of this community here for you whenever you need it. Sending you lots of love. 🧡 Kayleigh, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> team