Don’t give up!: My first year with MS Dx... - My MSAA Community

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Don’t give up!

10 months ago•14 Replies

My first year with MS Dx is complete. To celebrate, I splurged on a Cionic Neural Sleeve for my foot drop and dragging right leg. I haven’t had it long but I’m impressed with the results so far. Many of you know I still am an active rancher. I won’t quit! Nobody with this should!

So my orthopedic surgeon has been onboard since before my Dx. He’s been following my journey since I got my Dx. When I saw him yesterday, he commented that my most recent thoracic and brain MRIs were much improved over my original ones. Most significantly, my 22 mm Thoracic non enhancing lesion had shrunk to 15mm, with normal tissue appearing on either end. He knows I have been taking Clemastine daily for 5 months now (Rx from my GP). And, while he admits the 100 participants in the ReBuild study was too low to become gospel, the “robust response “ was still significant… basically what my MS Neuro said. BUT and this is a big BUT, both Drs said, if they had MS that they would be taking it!

Most importantly, I feel I’m walking better. I hope all of you are finding relief if not winning even small battles with your MS.

Happy New Year Everyone!

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irhunter

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Clemastine

14 Replies

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NorasMom10 months ago

Congratulations! It's always nice to hear good news from a doctor.

twooldcrows10 months ago

yes you go girl ,we all can ...love and happiness...

carolek572CommunityAmbassador10 months ago

Happy New Year, irhunter ! It seems like you’re off on a strong foot! I will be asking my doctor about her thoughts on Clemastine. Thank you for sharing your personal experience with the forum. Keep Smiling!

ahrogers10 months ago

What dose do you take? Are you also on a DMT?

irhunter• in reply toahrogers10 months ago

The Clemastine is per label which max is 2.68 per day for allergies. My DMT is Mayzent, full dose.

ahrogers• in reply toirhunter10 months ago

I see my neuro next week and will ask about it. Does it make you drowsy? I take Tylenol pm a couple times a week but if this does the same as the Benadryl it will do double duty!

irhunter• in reply toahrogers10 months ago

I take it in the evening a couple hours before bed and I have zero problems sleeping. I haven’t noticed the hangover drowsiness in the morning like Benadryl causes.

My Neuro wouldn’t prescribe it. It’s ’off Label’ for MS. She had me ask my GP. So I took screen shots of the May 2023 PNAS ReBuild Clinical Trial Report to my GP. After he read the ‘Robust response’ indicating possible remyelinization, he was writing that script… for my allergies, which is what it’s labeled for. Downside is max was 2.68 mg a day. The trial was triple that BUT for three months after stopping Clemastine, the subjects continued to show improvement. I admit the leap from 2.68 mg to triple is gigantic BUT I’ll make that leap!

The other plus is I haven’t had to use my inhaler, allergic asthma, like I do with Claritin. I also have the genitic allergy, Cold Induced Urticaria. Wet exposed skin with wind, between 32 and 40 f produces gigantic numerous hives. Clemastine has stopped that.

Negative… I have Federal Employees Blue Cross/Blue Shield. They won’t cover it so I’m paying $38 out of pocket. IF and a big IF, it truly is causing my oligodendrocytes to mature from OPCs, oligodendrocytes progenitor cells, to remyelination of exposed axons then I’ll pay it. At 60 yrs old, I don’t have the luxury of waiting for long clinical trials and FDA approval.

Good Luck!

ahrogers• in reply toirhunter10 months ago

I just checked Maek Cuban pharmacy and they have it for $18/ 30 tablets or $44/ 90 tablets Yes my last neuro told me a year ago that now is the time to consider a clinical trial due to age (55 now) and if I get more disabled I may not qualify. Unfortunately, there weren't any clinical trials for PPMS in my area I qualified for. Ocrevus has prevented new lesions though, so continuing on it for now.

Would love to repair some of my damage as I have quite a bit and the cord lesions are slowly scarring and causing more disability.

I hope it continues to work well for you. Staying active makes a huge difference too.

irhunter• in reply toahrogers10 months ago

Thanks for the lead on the cheaper Clemastine! I’ll look into it. I’m really sold on the Cionic Neural Sleeve for foot drop and gait problems. You might look into that. Not only does it stimulate individual nerves you might have lost contact with higher up but also fires the whole muscle group, reducing atrophy.

I just shot a video for my ranch channel, using the neural sleeve. When I get a url, I’ll post it.

ahrogers• in reply toirhunter10 months ago

I got one a few months ago. I haven't worn it to work yet as it isn't sufficient without an AFO to do the trick for that amount of walking. I wear it on weekends alone or with my Xtern AFO. The Xtern (worn on outside of shoe) is more comfortable than my walk on flex (worn inside my shoe) but allows my foot to slap down and makes too much noise to wear at work. I am hoping by wearing the Cionic sleeve with the Xtern AFO my foot won't slap down as much. Not quite there yet though. The Xtern is better for when I walk on uneven surfaces as my foot can form to the ground without interference like I have with the metal plate inside my shoe when wearing the walk on flex. It just doesn't lift my foot as well. So, for now I wear the walk on flex at work and either the Cionic sleeve or Xtern (or both) on weekends. At home I tend to just walk around the house in socks as my foot can just slide along the wood floor.

I think if I would have gotten the Cionic sleeve sooner it would have been sufficient alone. I am hoping with exercise and continued use I will do better. Glad it is working well for you!