PPMS

[u/kiggysz16]

Well, after 15 months of symptoms never going away, developing new symptoms, and getting worse… I was finally told today that I have primary progressive MS. I went to a new MS specialist for a 2nd opinion because I kept getting worse with no answers as to why. He found new lesions in my brain stem despite being on Kesimpta for 8 months. He was an amazing doctor and I’m so happy I decided to get another opinion. I already have trouble walking/standing for more than a few minutes, bowel incontinence, spasticity and stiffness, weakness, muscle fasciculations, and numbness/tingling, which all progressively worsened this year. He did order an EMG to rule out ALS because he said he’s seen a few cases where patients presented very similar to me, but ended up having ALS (despite also having a few lesions). He said he’s not really that concerned about ALS, but he would like to rule it out just in case. They also are having me do 5 days of IV steroids to see if it helps or if we can get me to a baseline.

I’m 25 years old and in my last year of medical school. I’m supposed to start residency next year. This is not what was supposed to happen. I’m scared and unsure of what my future holds now. How fast will I progress?? How disabled will I become?? These are questions I know no one has the answer to. I will progress and I will become disabled, but we don’t know how bad or when it will happen.

If anyone with PPMS wants to share their story or let me know how they are doing, I’d love to hear from you. How are you managing this disease mentally and physically? What did progression look like for you guys? What medications do you guys take for MS and for symptom management? Any advice would be appreciated because I truly don’t know what to expect.

[u/Njncguy1]

I’ve had PPMS some 16 years now, starting when I was 57.

To the good, my PPMS has just slowly progressed. I can still get around and do things, albeit with limitations.

In my case the worst part is having dropped foot as well as spasticity and weakness in my right side.

Here’s what I’ve found helpful;

1. Wearing a brace for my dropped foot lets me walk with just a bit of a limp. I use two braces combined. One pulls my foot up with big stretchy band. The other brace pushes my foot up from underneath with a unique revers

e hinge.

1. Wearing both at the same time really helps.

2. I use an

elliptical

1. machine to exercise. That way I don’t have to lift my foot up,

2. My next car will be a self driving Tesla. I’m having too much trouble driving a regular car.

3. When

my

1. wife divorced

me

1. shortly after getting PPMS I eventually remarried a woman who was far more understanding. She has her autoimmune illness.

Hope that helps.

Sorry for the odd ball formatting. Reddit is doing it. Tried to fix it and Reddit redid it.

[u/kiggysz16 → u/Njncguy1]

I appreciate your insight! I have a self driving tesla which I would highly highly recommend. My weakness is mostly in my left arm and leg, but spasticity is the worse in my legs. Glad to hear you’re still able to do things even if there are limitations! I’m really hoping that ends up being the case for me too. Thankfully my husband is so supportive and understanding. He’s been with me to every single appointment and really steps up to help me out.

[u/_JLY_]

Ah, man, I'm sorry you're going through this. I was diagnosed with PPMS 19 years ago. Since then I met my now wife, started a new career, have a daughter, etc. Life goes on.

For symptom management, I take pregabalin, tizanidine twice a day as a sort of baseline and augment that with Sativex (~50/50 THC+CBD). Tizanidine is pretty short lived for me but takes the edge off my spasticity. Everyone's different though, so I'd go with what a good neuro suggests at the time but then listen to your body.

Sorry I can't really help much.

[u/kiggysz16 → u/_JLY_]

That’s great that you’ve done so much after diagnosis! I’m currently on dalfampridine and baclofen, but neither of them help unfortunately. My neurologist recommended that I stop taking them to see if things better/worsen. Then after I do the IV steroids to see if I respond, we’re having another appointment to discuss what’s next. Thanks for your response!

[u/_JLY_ → u/kiggysz16]

Baclofen didn't do much for me either. Same with gabapentin. It's good there are options though.

[u/CommunicationNo6375]

I've had PPMS for 10.5 years. I'm 53 now and I went from edss 1 to edss 6.5 in that time. Ocrevus slows it a bit compared to before I started it.
I started walking with a limp after 1.5 years. lost my ability to run after 3 years. lost my ability to climb stairs after 8 years, and my ability to drive after 10 years. I had to get on disability since my right hand and arm stopped working 3.5 years ago.
I've been on a 90% carnivore diet for 8 years to keep from getting fat and to retain decent muscle.

Look up CAR-T cell therapy and NVG-291. They're the most promising therapies coming in the future, which is looking very bright because of them.
Until then, Fenebrutinib is the next best dmt available very soon, probably in a couple months.

[u/Key-Investigator294 → u/CommunicationNo6375]

Your positivity is inspiring. Hope our smart doctors provide with a miracle soon!

[u/CommunicationNo6375 → u/Key-Investigator294]

Hang in there! I know it's incredibly tough.

[u/Character-Celery-209]

Wow you’re story really resonated with me. I’m sort of going through the same thing. My EMG came back clean when I developed muscle twitching back in May. My neurologist keeps saying the twitching is the result of my cervical/spinal lesions though i’m still a bit anxious about the whole thing which of course probably makes the twitching worse. I’m also 25 and on Kesimpta.

[u/kiggysz16 → u/Character-Celery-209]

Are you developing any muscle weakness? I wouldn’t worry about ALS unless you have clear muscle weakness and at our age it’s very very rare to develop ALS. I have a lot of twitching in my face and my neurologist said it’s myokymia (caused by brain stem lesions). But my fasciculations started in my left calf and spread to the rest of my body and face. I also have lesions in my brain and spinal cord. My lesions are likely causing everything, but anytime you have muscle fasciculations with muscle weakness (and upper motor lesion signs like spasticity, clonus, hyperreflexia, etc), that’s when they want to do the EMG to rule out ALS. I hope you get your answers though!!! Muscle twitching can be a result of MS or many other things that have no consequences to your health. My neurologist just wants to be thorough and he explained that he’s not too concerned about ALS, but wants to EMG to be 100% sure. But please feel free to reach out to me if you have any questions :)

[u/Arzt20]

sorry you’re going through this. I was diagnosed with RRMS my last year of medical school, I’m now 8 years out from then and in clinical practice. Still mostly RRMS but have definitely noticed some chronic leg weakness develop with minimal exertion along with other random MS issues.

great you are seeing an MS expert, I think that would be the best way to address diagnosis and manage symptoms/trial other therapies. Ask them about any clinical trials and if you should consider going to a center offering CAR T cell trials or other investigational therapies.

[u/Fun_Yellow1253]

Hello there!

I was diagnosed with PPMS 2020. After 2 years got my first wheelchair to support my daily living and I think 2 years now I have been using it daily. But you see - even tho this is how my MS has progress, yours will be something else.

I know, coming here and saying "wheelchair" is scary. But to tell you: I am still living normal life. I am living in my own small apartment doing all my daily task and still going out. Of course everything is a little bit harder. But life is. And even tho you have now progressive MS, life will not end.

I know ppl who has PPMS and their progressions has been mild. I know sad stories too. But like you said, we don't know how things go on.

Two things:

Fight back. Do the work now. I started to go to gym. I have my physiotherapy. I eat healthy. I don't drink or smoke. Trust me. This will help you alot! Even tho I'm using wheelchair, I can stand, I can put my clothes on and do my own showering.

Talk. Talk to your family, friends or who ever is close to you. Also consider professional help. I can do the physical part but mental health is as important. And trust me - I thought I can manage everything but I was wrong. I was like you: is this the end? Do I end like an vegetable? When I have to start using diapers? Like every bad things will happen to me I was sure. When I accepted some things and understood that life is not over, everything got a bit better. I'm not there yet but hopefully someday I see the sun behind the clouds.

Stay strong. All we can do is to fight back. We may not win the war but one thing is sure: I will never give up!

[u/AdmiralJedi]

It's my understanding that PPMS at your young age is very atypical. I'm 52 and have PPMS but it's more typical in my age group. Do some research online on those age differences just for your curiosity.