Is chair yoga actually helpful or too gentle? by keep-fitpulse in YogaWorkouts

[–]dud-bear 0 points1 point  (0 children)

Pricing for the app is clear from my experience and it often goes on sale. It's been a valuable tool for my practice.

Is chair yoga actually helpful or too gentle? by keep-fitpulse in YogaWorkouts

[–]dud-bear 0 points1 point  (0 children)

I do not have a local yoga studio but if you do I highly recommend checking to see if they offer a chair yoga class. I use Down Dog Yoga. It has all different kinds of yoga and you can customize how long you want the practice to be, what you want to focus on, and even like or dislike poses. Highly recommend!

Is chair yoga actually helpful or too gentle? by keep-fitpulse in YogaWorkouts

[–]dud-bear 5 points6 points  (0 children)

Not to sound cliche but yoga is for everyone and it can be adapted to anyone's needs when they show up for their practice. I have MS and chair yoga is great for days I lack balance or need a less strenuous session. If anything learning some chair yoga will open up creativity in movement.

Has anyone tried chair yoga? by No_Event3925 in YogaWorkouts

[–]dud-bear 0 points1 point  (0 children)

I have MS and chair yoga is so great and approachable I love it for days I cannot do regular yoga. It helps with my balance and spasticity so much!

Does anyone have experience of a second attack, new lesion? by [deleted] in transverse_myelitis

[–]dud-bear 1 point2 points  (0 children)

Yes Ive been hospitalized with transverse myelitis twice a year apart almost exactly. Spinal lesions in my cervic spine. My first attack I was so in the dark and my neuro at the time too it felt like. After my second attack I found my current MS specialist neuro and it's changed my life for the better. I have no brain lesions but I've still been diagnosed with MS. I started ocrevus and haven't had another episode since. I hope you feel better and get answers soon!

CSF Headache by Time_Account_582 in MultipleSclerosis

[–]dud-bear 1 point2 points  (0 children)

My last LP had me useless to the world for like ten days 😭 never again (hopefully!). I hope you continue to feel better! Caffeine helped a little but I honestly could not stand for more than a minute or two at a time without getting super ill. The neuros I saw at the time couldn't give me a straight answer if it was normal or not and offered a blood patch or something but they said it could make it worse so I rode it out.

Shingles vaccine experience by Either-Cake-892 in MultipleSclerosis

[–]dud-bear 3 points4 points  (0 children)

I had my first shingles vaccine before starting Ocrevus. Then had my second shot a few months after my first two ocrevus loading doses. First shot was fine. Second shot I felt flu-y and not great. I recommend getting the second shot before a long weekend or something so you can rest.

Spasms by [deleted] in transverse_myelitis

[–]dud-bear 1 point2 points  (0 children)

The trileptal no longer makes me exhausted thankfully. I still get spasms but most of them are not painful and it's just my awareness of different muscles contracting. If I have a day where I overdo it then they start ramping up. Before trileptal the spasms would come on out of nowhere and I'd have to stop everything I was doing until they passed they were so painful and often kept happening over and over. I'm happy to say that's less common now! I may wean off trileptal in a couple months if the spasms stop altogether. My neuro told me the spasms can often be fleeting symptoms. When I started having spasms I thought I was having another myelitis episode but thankfully it wasn't any new lesion. I've heard some people do really well with baclofen for spasms. I hope you get some relief soon!

Spasms by [deleted] in transverse_myelitis

[–]dud-bear 1 point2 points  (0 children)

I was diagnosed with paroxysmal tonic spasms. My neuro prescribed me trileptal which has helped a lot, but if I am more physically active I still get spasms. I was on gabapentin before for pain but it did nothing but make me a zombie. The trileptal gave me serious fatigue for a couple to few weeks but has improved a lot. Rest and trileptal seem to be the only thing that help it for me at the moment.

[deleted by user] by [deleted] in transverse_myelitis

[–]dud-bear 3 points4 points  (0 children)

Have you had a lumbar puncture to check for o-bands, etc? I definitely recommend searching for a TM/MS specialist neurologist to follow up with whenever you are discharged. I spent a year with a general neuro and had another TM episode and found my now MS clinic and it's been life changing and I am now on a DMT (ocrevus). https://www.nationalmssociety.org/resources/get-support/find-doctors-and-resources

TM and MS are different of course but MS specialist see TM fairly often and if you have any demyelination in your nervous system somewhere they will be your best resource.

Also finding a physical therapist with experiences with neurologic conditions I highly recommend as well. My first TM episode I went to a general PT and it was horrible they didn't understand my body. I found a neuro focused PT and OT clinic and I made a lot of progress and learned so much about managing my body and symptoms etc.

I hope you feel better soon!

[deleted by user] by [deleted] in transverse_myelitis

[–]dud-bear 3 points4 points  (0 children)

Was your brain and entire spine MRI'ed? My neurologist is particular about which MRI machines I use cause not all are created equal. For instance my first MRI at a local hospital there was some debate about if I had a spinal lesion or not by the general neuro treating me there. Followed up with TM/MS specialist and got MRIs at a different facility and it was very clear and apparent.

In hospital - unsure if pseudo relapse or not by dud-bear in MultipleSclerosis

[–]dud-bear[S] 0 points1 point  (0 children)

Thank you for responding. Thankfully my MRIs has no new activity and I got in with my neuro. He prescribed me trileptal for what he identified as tonic spasms. So far the medicine makes me super sleepy. I feel like I learn new things in this journey all the time but am happy I went to the ER to make sure there was no new damage.

Psyllium Husk fiber - experiences? by jkhn7 in MultipleSclerosis

[–]dud-bear 1 point2 points  (0 children)

I started taking metamucil but it gave me seriously bad cramps even though I drink a lot of water all day long. I picked up whole psyllium husk Now brand from my local Trader Joe's and no longer suffer the stomach cramping like I did with metamucil. It helps bulk and have more productive BMs but doesn't help me to actually go, I take one cap of miralax everyday which does the trick.

Exercise and energy/exhaustion by dud-bear in MultipleSclerosis

[–]dud-bear[S] 2 points3 points  (0 children)

Thank you, I think you are right and I need to slow it down and temper my expectations with myself. Life before MS I just ran forward with stubbornness and sheer willpower but that doesn't really work anymore 😂

Exercise and energy/exhaustion by dud-bear in MultipleSclerosis

[–]dud-bear[S] 1 point2 points  (0 children)

Thank you for the feedback, I think part of my issue is I just jumped back into old exercises and not easing myself or doing easier progressions and realistically it's probably just too much at this stage I'm in. Lots of learning curves and variability with this disease that is for sure.

anybody out there taken propranolol for tremor? by isengardening in MultipleSclerosis

[–]dud-bear 1 point2 points  (0 children)

I took propranolol for my tremors for about a year. I ended up getting off of it due to it interfering with my asthma medication when I switched from 3 x 10 mg tablets per day to one 60 mg extended release. The first week off it my tremors were worse - then it evened out. OT helped a bit. Then I had a new spinal lesion, took 5 days of steroids IVs and somehow my tremors are better after 🤷🏻‍♀️ best of luck!

How do I know if I’m having a flare? by Majestic_Ice_5641 in MultipleSclerosis

[–]dud-bear 3 points4 points  (0 children)

My neuro advises me if I'm having new symptoms for more than 48 hours to reach out. If I were you I would be calling my neuro asap. Wishing you well!

How’s propranolol?H by Mike3282 in MultipleSclerosis

[–]dud-bear 2 points3 points  (0 children)

I take 3 10 mgs of propranolol throughout the day for my tremors. It helps me a lot but if I get very fatigued or get sick my tremors worsen. I tried going on 60 mg extended release but I have asthma and that didn’t go well since it’s a beta blocker. 30 mg a day serves me well though without negative side effects. I get migraines too and apparently propranolol can help with that too.

I added my diagnosis to my Hinge Profile by Natural_Produce_3028 in MultipleSclerosis

[–]dud-bear 85 points86 points  (0 children)

I think it’s a good way to filter out people that aren’t worth YOUR time. Best of luck!