Hello all,
I know this thread doesn’t quite match my diagnosis and im in a rare sub set of the MS family tree. But honestly this is the closest I can get to any support.
There’s no patient information leaflet for me or support group because my condition is so rare even some MS nurses haven’t heard of it.
I have solitary sclerosis, a single demyelinating lesion in my brain stem that progressively getting worse over 4 years. I’m loosing the function of my whole right side. I know there’s no treatment and I know its only going to get worse. I’ve give up trying to find anyone else with the same condition and i didn’t really feel like i wouldn’t be invited to the MS community because officially on paper I don’t have MS. But I feel if anyone can understand having an auto immune condition that will slowly keep taking away pieces of you then its you lovely people.
Anyway! enough about me! I want to hear about you guys. I’m really struggling with what’s to come. How do you deal with every hurdle that’s yet to pass? the first time you need to use a walking stick (which is imminent for me), not being able to drive, reducing hours at work, not being able to handwrite.
What gets you through? i know friends and family and all the usual stuff, blahh blahh, but how do you mentally survive this curse? what saying or story or unique thing helps you keep taking the punches. Im struggling not to feel consumed by doom.
I’d love to hear from you.
Dawn
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Hey Dawn,
Welcome to the group. Sorry to hear you are having such a hard time a lot of what you are going through sounds like me with Primary Progressive MS. I’m pretty much in need of a stick all the time inside to get around and dual sticks outside. Along with my right side going to poop affecting my hand writing. Also sorry that support for you has been far less.
Mentally my way of getting through things is to list out what I would like to get done in priority and not get hard on myself if i cant.
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Can I ask, what point did you decide to use a stick?
and was it an easy adaptation in the end?
some days i feel like life would just be easier to just bite the bullet and start using it before I start falling over. but the other stubborn half of me desperately wants to make the most of the days managing without.
Seems silly saying it out loud now and maybe I need to get over my ego. i suppose its that first step of a visible disability. I’ve always been able to hide it until recently. my body is probably ready but my self esteem maybe isn’t :s
When it got to the point my balance meant I could not navigate inside my home without the fear of falling over was when I had to use sticks. Its been a mix to adopting them since sometimes I don’t notice as much but if something needs both hands and need to ask for help is when it hits me.
It does take a while to accept that you need to use them and shrug off any shame in doing so out in public. But have gotten to the point I’m doing what I need to do things day to day and if people look at me funny its their problem.
Thanks for sharing. Its quite a lonely journey im finding. Good to hear others experiences.
Hi Dawn,
I felt weakness in my legs, especially left leg, about 7years ago. I was diagnosed with PPMS 3 years ago following and MRI. The future did look bleak at the time. I have done lots of reading and research since and have found some ‘hope’ that not all is lost. I find youtube helpful. I would advise looking up up Dr Terry Wahls and her story and treatments. I also visit an Osteopath and Applied Kinseologist who have helped massively.
Hope this helps
Tony
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I wouldn’t bother fussing to much about using a stick and keeping safe is a far better option. We all need to adapt to changing circumstances and while a stubborn streak can be quite useful at times, being reckless is potentially dangerous.
Trust your instincts and you won’t go far wrong.
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Hi Dawn,
Although I’ve had multiple sclerosis since around 2000, I only started using walking aids (2 sticks) in 2019, after a hemorrhagic stroke not directly linked to MS --well sort of.
I know I’ll never be able to hop, skip and jump again but, hey-ho I think I’ll get over it.
You’re not alone, this forum is a good community for fellow sufferers, stay strong.
Best wishes,
JP
Hi Dawn,
I’m currently undiagnosed but have been dealing with symptoms (urinary/bowel disfunction / Numbness in feet and legs - hyperactive reflexes, and loss of sensation - mainly in feet but all throughout my body) for about 3 years. 3 Year Urinary, 1 Year Bowel, and about 6-8 Months dealing with neuropathy.
I have a single hyper intensity in my cortico spinal tract in the left pon. I’m wondering if it is MS, CIS or Solitary Sclerosis.
Was your first symptom loss of motor function?
Wish you the best!
Hi!
For me it was an incredibly subtle and slow loss of dexterity in my right hand, then foot drop then stiffness. Affects my whole right side. Im still very functional but the rate of progression has been slow and subtle. No other symptoms apart from numb ears 2 years prior.
Ive recently had more scans so will see what they say.
Waiting for diagnosis can be so frustrating and scary. But for me it doesnt really matter what lable they give it. Theres nothings they can do so i just work with my body as best i can xx
Hi,
I actually have a 2nd question for you if you feel comfortable sharing.
During your testing, did you do a spinal tap and did you have presentations of oligoclonal bands?
It is very scary. I’m hoping they label as normal MS and I can get on a DMT medication.
Did you try Methylprednisone (Steroids)? Did they not improve symptoms?
Prednisone helped me initially, but the relief was short lived and I started relapsing again. Just finished a 3 day course of 1g a day (IV), and I’m hoping to see some more improvement vs the oral form.
I did yeah and there were the right bands present to consider an MS diagnosis but only one identifiable leison in the brain stem so bit of a rare case with the progression that i have.
I was treated with steroids but there was no difference at all.
As i understand it. Id had the inflammation and now its not actively inflamed there is no treatment. The clean up cells after the damage just keep cleaning up, and i think that takes the healthy cells too. Cant turn them off so just a steadily progression.
Thats how i understand it anyway.
Yeah getting the MS diagnosis can open doors to lots of support. Untill you get that we’re pretty much on our own ive found. But ive managed my way round it all.
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Sounds like they’re doing a good job trying to tackle it.
But even if theres no specific treatment yet theres ways to manage symptoms and its not all bad 
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Interesting! Thank you for sharing. I wish the best for you. If I was in your shoes, I wouldn’t be opposed to looking at a DMT medication. It sounds like you may fit the “McDonald Criteria” and that it could potentially slow your overall progression. (Obviously they have side effects and I’m not a doctor so its up to you! But that’s my opinion from the academic literature I’ve looked at)
What’s odd in my case is that I do not have Oligoclonal bands, I have a single lesion on the cortico spinal tract in the brain stem, and the steroids have definitely helped me.
I’m not sure what they will label mine as, or if maybe I’ve caught it somewhat early.
I’ll shoot you a message when/if I find out more. Good luck to you my friend!
Yes do keep intouch! Ive nevee met anyone with my diagnosis. Been quite a journey with no real answers but then thats good and bad. Its not certain how fast ill deteriorate, so i see it as not being set in stone and taking each day as it comes.
My neurologist said we can try DMT down the line but as there was no response to steroids its unlikely it would work. So the gym and healthy eating is my medicine!
Keep me posted how you get on! Good luck with everything! Took me 4 years to get a diagnosis so i understand the worry and frustration!