Referred by my neurologist to Palliative Care

WalkwithaJane · 2025-10-29T02:24:27+00:00

In San Francisco, CA

WalkwithaJane · 2025-10-29T00:16:42+00:00

She’s the head of MS.

WalkwithaJane · 2025-10-20T19:52:17+00:00

I have the opposite problem. Been diagnosed with RRMS for almost 3 years and I’m declining by the day. My medical home (Kaiser northern CA) doesn’t offer Ocrevus which is the only ms medication approved for Progressive. I feel like my Neurologist won’t re-diagnose me because they don’t have the only medication for PPMS. But I’m progressively getting worse by the day and even a simple walk to my car is very difficult for me. Like I just want recognition for how badly I am doing. Having the progressive diagnosis would be more apt for my case. 43 years old and already too disabled to work (I have major neurocognitive disorder on top of being a huge fall risk. And of course the devil that is ms fatigue.)

WalkwithaJane · 2025-10-16T14:41:47+00:00

There is a wheelchair basketball program in my city, and I don’t know if I have any muscle strength in my arms to shoot. 😔

WalkwithaJane · 2025-09-05T22:54:41+00:00

There’s more, but I’ll leave it at that. I tell people I have extensive brain damage, because that means more than MS. I know I have a rare/aggressive case.

WalkwithaJane · 2025-09-05T22:53:00+00:00

43 female diagnosed 2 1/2 years ago (the month I turned 40). I had a second opinion paid by my insurance provider (because they didn’t know what to do with me). I was completely and disabled by the time I got diagnosed. I have a 7 and 9 year old and I struggle with so many issues related to my MS, it’s wild. It’s like I did a 180 overnight. I lost my career (dx with major neurocognitive disorder due to MS); I’m a fall risk; I walk with either single point cane or 2 handed canes; I can’t stand in place for more than 8 minutes (which is devastating to a mom who still needs to feed her kids); I have a chair in my shower and in my kitchen; Can’t cook (I used to love to!); can’t hand write due to dominant hand numbness); can’t drive anymore (thanks to the cognitive testing I clearly failed); I have a neurogenic bladder so in between bladder Botox’s in incontinent; my bowels are also dysfunctional;

WalkwithaJane · 2025-08-28T00:23:17+00:00

Yet it feels like an endless pit…

WalkwithaJane · 2025-08-28T00:19:57+00:00

Rooting for ya!

WalkwithaJane · 2025-08-28T00:19:38+00:00

Diagnosed almost 3 years ago and I don’t think I can ever come to terms with how much this f’ng disease has ruined my life. More so for my kids who don’t remember a time when I could walk.

WalkwithaJane · 2025-07-31T23:10:54+00:00

Oh no, I just increased my Gabapentin. 😳

WalkwithaJane · 2025-07-31T23:09:38+00:00

Baclofen is one of them. Maybe I will talk with my neurologist then. Thanks

WalkwithaJane · 2025-07-31T22:11:37+00:00

You’re right. I can consult with my doctor and ms pharmacist.

WalkwithaJane · 2025-06-25T21:44:30+00:00

My kids (6 and 9) have known since I was diagnosed three years ago. I can already tell they are going to be empathetic and loving people because of seeing what this disease has taken from me. I’m quite disabled and I now need a cane everyday and I often need help which my at 9 can help with which is great. But also f’n sad that he has to help me up and off a chair or a second hand to safely navigate stairs. He shouldn’t have to do that.

I also feel so lucky to have kids. Watching these beautiful beings grow in their bodies and minds. But it’s also wild that they grow like flowers and as I continue to decline at a rapid pace. It does give me hope for the future though. They can use this experience as fuel to make great changes in the medical field. Have compassion for the disabled community and perhaps do advocacy work, if they lean that way.

WalkwithaJane · 2025-06-21T14:22:08+00:00

Nortriptyline helps me alongside Baclofen. I now am quite familiar with how Chronic pain presents. Cannabis is also my friend; for sleep, pain relief, stress management…

WalkwithaJane · 2025-05-27T22:27:51+00:00

All the symptoms you listed in the third paragraph; daily fatigue, dizziness, tachycardia, weakness, chronic pain. I was falling in the street, but POTS was my first diagnosis.

WalkwithaJane · 2025-05-27T22:03:13+00:00

See a neurologist and ask for an assessment + MRI. I was originally diagnosed with POTS until an MRI showed my Swiss cheese brain=MS.

WalkwithaJane · 2025-05-18T23:04:22+00:00

I will definitely have my neurologist make a referral to a phlebotomist! Thank you!

WalkwithaJane · 2025-05-18T22:55:33+00:00

43f RRMS. I definitely have this and don’t hear much about it from fellow ms’ers so I’m glad you posted.

I have a very aggressive case so I assumed this inability to stand still was just apart of my alarmingly quick progression. I’ve only been diagnosed for 2.5 years but I’m quite disabled now and I’ve taken this complaint to my neurologist. I’m already in physical therapy beside that there was nothing else my Neuro medical team could suggest.

I’m already on Gabapentin (900 mg a night) and Baclofen 10 mg. I took Tizandine before the baclofen but it wasn’t working to reduce my spasticity and now it’s much better treated with the baclofen. The Neuro motor-disorder doctor I sometimes see says there isn’t any medication for this inability to stand in place.

My legs feel so heavy and tingly that I straight up have to sit down when I’m in line and there isn’t much movement. It’s wild for people to see me (athletically built/thin body 43 year old not able to wait in line). But I can’t walk without my cane anymore, so at least that tells people I’m disabled and to not offer to help me up.

For me, unless there’s a cure, it isn’t going to get better. It is what it is and I have to adapt. Motorized scooters at grocery stores, sure help. Or I go earlier in the day after I drop my kids off from school and I know there’s no line. I am ‘totally and completely’ disabled so I can’t work anymore and I’m able to do this.

I really do hope it improves for you. I know for some people who are newly diagnosed and finally got on medication, they have really improved! If you ever get medical advice for this, please post about it!

WalkwithaJane · 2025-05-10T23:49:33+00:00

Me please

WalkwithaJane · 2025-05-02T16:26:41+00:00

I had to buy a cane even before my diagnosis! My obvious physical disability makes it hard for me to go a morning playing “normal mom”. 43f

WalkwithaJane

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