NeuroNerdyX
NeuroNerdyX
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Jomeca Foot Drop Brace For MS? Walk Better! I put it to the test. #multiplesclerosis
Do you have Foot Drop from MS,? I do!. I started looking at solutions to help prevent my falling and also wearing my shoes out prematurely. I found the Jomeca Foot Drop Brace and put it to the test.
I tried a number of shoes, you can see that video review here:
czcams.com/video/zqGSJ9L7DvA/video.html
But ultimately, it was time to get serious with other possible solutions.
I purchased an MS drop foot brace on Amazon, here’s a referral link ( get a few pennies tossed my way if you purchase through this link. The gesture is greatly appreciated. )
www.amazon.com/dp/B0BXNQW3GY?psc=1&ref=ppx_yo2ov_dt_b_product_details
My conclusion? Yes, it’s effective. But let’s see it in action. Watch the video.
Thanks!
Cliff.
#aimusic
zhlédnutí: 26

Video

About My Service Dog Amelia, helps me deal with multiple sclerosis (MS). #BorderCollie #servicedog
zhlédnutí 57Před dnem
Meet Amelia, My Border Collie Service Animal that assists me with navigating my MS ( multiple sclerosis ). Amelia assists me with maneuvering around when my balance, eyesight, and cognitive abilities are impaired by my autoimmune disease. Amelia's ability to detect the need for assistance before I know I need assistance is an impressive display of intuition, she knows me very well. In this vide...
Is This the BEST Place to Live With Multiple Sclerosis?
zhlédnutí 17Před dnem
Struggling with MS & Weather? In this video I’ll share my personal experience living with MS in North Carolina and how it compares to living in other climates across the country. Plus I’ll show you a FUN place to escape the heat with the best Family Friendly Activities Share your experiences in the comments below! Here’s where we went - Wilderness Run Alpine Coaster: www.wildernessrunalpinecoas...
Top 2 Cooling Vests Compete in 9 hour endurance challenge. Surprise ending | Multiple Sclerosis |
zhlédnutí 94Před 14 dny
Comparing two of the best Cooling Vests on the market with a head to head 9 hour heat test.. I was not paid to do this review, these are two cooling vests that I own and have owned for some time. I wanted to see how well they perform overall. I created an unbiased test and got to work. Thanks to Andrea @InventorParents for being a good sport and modeling. :) People with multiple sclerosis (MS) ...
Texas MS 150 2022 Day 1/2 Review/Ride (Rain, Heat, and Multiple Sclerosis). @nationalmssociety
zhlédnutí 62Před 14 dny
The Texas MS 150 is a two-day charity bike tour that benefits the National Multiple Sclerosis Society [National MS Society]. It's the largest fundraising event in Bike MS across the country. The most recent event took place on April 27-28, 2024. Cyclists rode various routes starting in Houston and Austin before converging in La Grange and finishing at Texas A&M University in College Station [Te...
The Best Walking Shoes for Multiple Sclerosis? One has almost 2 Million Steps of wear and is $69.00
zhlédnutí 203Před 21 dnem
With Multiple Sclerosis, I walk a LOT to stay in shape. I use a lot of shoes, but have found some that I love, and some that I hate. I review three of mine in this video. There is one clear winner for value, and one clear winner for comfort. As an amazon associate I may earn commissions at no extra cost to you. Foot Pain Relief Orthotics amzn.to/3zvtSPm ASICS Men's GEL-CUMULUS 26 Running Shoe a...
My Symptoms of Multiple Sclerosis in Song Format. (Vision, Balance, Bladder, Heat Fatigue)
zhlédnutí 57Před 28 dny
I wanted to create a song about the my most pressing symptoms since they can't often isolate me from those around me. The song is called "Lonely Road" because, even though I feel supported, a chronic illness can feel like a lonely journey at times. The depression of MS can be a lonely experience because everyone's MS is a little different, so no two people travel the same path. I hope you enjoy...
We loved, lived, But LEFT AUSTIN Texas. (Affordability, Weather, Multiple Sclerosis. Here's Why!
zhlédnutí 31Před 28 dny
Austin is a wonderful town, Texas is a great state and there are no kinder people anywhere in the US, but Austin isn't for everyone. Find out why we packed up and left the friendly state. Other cities where we have lived. Chico, California czcams.com/video/y8H-YUa45pA/video.html San Diego, California czcams.com/video/qXIoxnerVoY/video.html
Can this Theme Park be fun w/ Multiple Sclerosis? Tweetsie Railroad Park | Accessibility Review |
zhlédnutí 65Před měsícem
Tweetsie Railroad might be enjoyable for someone with MS, but it depends on the severity of their condition. Here's a breakdown of some factors to consider: Accessibility: The park offers wheelchairs and motorized scooters for rent. They also have some rides that are accessible for wheelchairs. The terrain is hilly, so there will be some walking involved. There are benches and places to rest th...
We Loved, Lived, but Left Chico California, Why? |Affordability, Healthcare, Multiple Sclerosis|
zhlédnutí 12Před měsícem
We moved to Chico California area in 2016, it was magical. However, Multiple Sclerosis would play a role in our decision to leave. We didn't expect Chico to be insanely hot and insanely expensive. The video tells the story of love found then lost.
We Lived, LOVED, but LEFT San Diego, HERE'S WHY! | Livability | Healthcare | Environment | & My MS
zhlédnutí 19Před měsícem
We Lived, LOVED, but LEFT San Diego, HERE'S WHY! | Livability | Healthcare | Environment | & My MS
I Got My MS Drugs For Free | Between Insurance | Here's HOW! #multiplesclerosis #KESIMPTA #health
zhlédnutí 77Před 2 měsíci
I Got My MS Drugs For Free | Between Insurance | Here's HOW! #multiplesclerosis #KESIMPTA #health
Join me Live to talk MS and patient empowerment today at 11am/cst (Link in Description)
zhlédnutí 47Před 3 lety
Join me Live to talk MS and patient empowerment today at 11am/cst (Link in Description)
Multiple Sclerosis Journey Update: 20 Months and 6 Infusions Later, Life With Ocrevus.
zhlédnutí 1,3KPřed 3 lety
Multiple Sclerosis Journey Update: 20 Months and 6 Infusions Later, Life With Ocrevus.
Your Multiple Sclerosis Doesn't Want You To Know About This Secret Weapon!
zhlédnutí 130Před 3 lety
Your Multiple Sclerosis Doesn't Want You To Know About This Secret Weapon!
Multiple Sclerosis Doesn't want you to know about this not so secret weapon.
zhlédnutí 83Před 3 lety
Multiple Sclerosis Doesn't want you to know about this not so secret weapon.
My Multiple Sclerosis Journey Part 11- Ocrevus infusion #3
zhlédnutí 195Před 4 lety
My Multiple Sclerosis Journey Part 11- Ocrevus infusion #3
My Multiple Sclerosis Journey Part 10 - The Flu and The Crap Gap
zhlédnutí 434Před 4 lety
My Multiple Sclerosis Journey Part 10 - The Flu and The Crap Gap
My Multiple Sclerosis Journey Part 9: 144 days after second Ocrevus Infusion.
zhlédnutí 556Před 4 lety
My Multiple Sclerosis Journey Part 9: 144 days after second Ocrevus Infusion.
My Multiple Sclerosis Journey Part 6: The day after Ocrevus infusion #2
zhlédnutí 228Před 4 lety
My Multiple Sclerosis Journey Part 6: The day after Ocrevus infusion #2
My Multiple Sclerosis Journey Part 2. After my first infusion.
zhlédnutí 124Před 4 lety
My Multiple Sclerosis Journey Part 2. After my first infusion.
My Multiple Sclerosis Journey Part 3 - 9 days after the first infusion.
zhlédnutí 70Před 4 lety
My Multiple Sclerosis Journey Part 3 - 9 days after the first infusion.
My Multiple Sclerosis Journey. Part 1 - Infusion Day with Ocrevus
zhlédnutí 324Před 4 lety
My Multiple Sclerosis Journey. Part 1 - Infusion Day with Ocrevus

Komentáře

  • @SoapyCilantro
    @SoapyCilantro Před 6 dny

    That was very corny

  • @ktimmer2
    @ktimmer2 Před 6 dny

    👍

  • @mikodantoni5221
    @mikodantoni5221 Před 7 dny

    Yay, Amelia! Thank you for sharing!

  • @InventorParents
    @InventorParents Před 14 dny

    Behind the scenes footage: czcams.com/users/shortsWf5ahrU1DLU?si=UNYlwhhuSPYA3-jS

  • @CardozaTube
    @CardozaTube Před 17 dny

    Hey friend, congratulations 🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼 Please could you tell how to recover balance in a MS body? Please 🙏🏼

    • @NeuroNerdyX
      @NeuroNerdyX Před 17 dny

      I've learned to stop before I overdue it. That seems to be the only way for me. This particular ride was 2 days, but I opted out of the second day because I could tell the second day would have done me in. I hope this helps, it seems different with everyone I meet that has MS. Everyone has their strategy or is working on figuring it out. Thanks for the comment!

  • @healthy-natural-10
    @healthy-natural-10 Před 21 dnem

    Hykes Pinnacle

  • @MsY3sssi
    @MsY3sssi Před 22 dny

    Ooo, my husband doesn't have MS but always runs hot. Gonna get us a matching pair lol

  • @MsY3sssi
    @MsY3sssi Před 22 dny

    Thank you! It's been a struggle but I'll give this a try

    • @NeuroNerdyX
      @NeuroNerdyX Před 21 dnem

      I wish you the best! I hope it helps.

  • @grandwazoo870
    @grandwazoo870 Před 22 dny

    I wear postal walking shoes.

  • @sofiabanuelos4953
    @sofiabanuelos4953 Před 25 dny

    I don’t feel my big toes right now am in big pain I will to take my insurance for that thank you for your help

    • @NeuroNerdyX
      @NeuroNerdyX Před 25 dny

      I am on Kesimpta now and it is working much better, no crap gap. Good luck with your journey and thank you for the comment.

  • @donnamarie3918
    @donnamarie3918 Před 29 dny

    This was absolutely beautiful. It needs to be out there. The thing about country is that most songs tell a story. Love this

  • @spencehewitt
    @spencehewitt Před 29 dny

    This was really good. You should be proud of yourself!

  • @user-dj4pp3eq1u
    @user-dj4pp3eq1u Před 29 dny

    i also moved there from california. central valley and it gets to be 110 degrees somtime. however austin 105 degrees as you stated feels like you are in Hell. its a new level of hot. my sister has MS, godspeed brother thanks for video. im guessing you moved to Idaho, if not Idaho im going to say Colorado. if not colorado im going to say Montana. i know i got 1 of them right. no way you moved to the PNW.

    • @NeuroNerdyX
      @NeuroNerdyX Před 29 dny

      Good guesses!! :) I was born in Colorado, lived there for 10 years, it was rough. Idaho is nice! I'll announce the newest location soon. I shot a bunch of cool video and accidently erased it. Haha.. So going to reshoot this weekend. :) Thanks for the guesses!

  • @mybachhertzbaud3074
    @mybachhertzbaud3074 Před měsícem

    It sounds a bit like a rollercoaster ride in hell.🤔

    • @NeuroNerdyX
      @NeuroNerdyX Před měsícem

      Definitely, except Hell doesn't require insanely expensive insurance. (so I'm told.)

  • @Carmen-nn1hi
    @Carmen-nn1hi Před 2 měsíci

    When you can't look cool, be cool. Now I want one of those.

    • @NeuroNerdyX
      @NeuroNerdyX Před 2 měsíci

      I figure nothing looks as dumb as when I piss my pants because I'm too hot. That's always a fun symptom. Haha.

  • @danielmcinerney9949
    @danielmcinerney9949 Před 7 měsíci

    How are you now? Thanks so much

    • @NeuroNerdyX
      @NeuroNerdyX Před 7 měsíci

      Hi Daneil, I am releasing an update soon. It has been crazy. More on that soon. How are you?

    • @danielmcinerney9949
      @danielmcinerney9949 Před 7 měsíci

      @@NeuroNerdyX in the fight of a lifetime with and invisible enemy thank you for asking 🙏

    • @undefinable68
      @undefinable68 Před 5 měsíci

      I have used Tysabri for three years without a problem and no ms progress . It’s a monthly infusion and by week three I would feel the “crap gap” but nothing too severe. Had no ill effects from the 1 hour infusion and didn’t have to stay for the 1 hour observation period. Was happy with the drug. But then I tested high titer for positive JCV virus. My neurologist decided it was too much of a risk so in 2 days ( after many many blood tests) I’m getting my first Ocrevus infusion. I’m going to give it at least 3 or 4 infusions to make a decision on it.

    • @danielmcinerney9949
      @danielmcinerney9949 Před 5 měsíci

      @@undefinable68I too recently was diagnosed with jc at what number on the index are you? I was 2.1. At what point should this be a concern IYO? The continued use of steroids that have to be given at infusion is what I’m fearing not the ocravus. Thanks

    • @undefinable68
      @undefinable68 Před 5 měsíci

      ⁠@@danielmcinerney9949 I think I was 3.3 or 3.5 titer. In true transparency though, my doctor thinks the risk is not worth it with so many other decent drugs available, so I think any result of JCV , she would have pulled me from Tysabri. Interestingly enough, one of her nurses told me they had been getting a lot of high titer results lately. Hopefully the Ocrevus will work, but if it becomes too problematic, I have no aversion to changing to another drug. Luckily , my neurologist is amazing and orders bloodwork and MRIs every three months. She works with me and heavily pushes exercise, water, mental health support and clean eating. She also encourages researching everything on my own and is available to discuss it anytime I want. I really lucked out with her. I will ask her for her thoughts on the steroid use, if I need it and what she thinks about the hazards of prolonged use. Thank you for your response, I didn’t even think about the steroid risk.

  • @benmartin1727
    @benmartin1727 Před 2 lety

    thanks for sharing. I start on ocrevus next week, and hearing about even small improvements gives me hope,

    • @NeuroNerdyX
      @NeuroNerdyX Před 2 lety

      Good luck. I have hope for you..I have a special announcement coming up soon, probably post in the next two weeks.

  • @paulkeelan7465
    @paulkeelan7465 Před 3 lety

    Great videos. Made me feel a little optimistic

  • @paulkeelan7465
    @paulkeelan7465 Před 3 lety

    I’m yet to be diagnosed with ms, but I have inflammation on my brain and spinal cord, have bands in my lumbar puncture and I have been housebound for 2 years. My body feels so heavy I struggle to walk, I have dizziness and my hands and feet move slowly. I was seeing double, but seems to have gone away following the oms diet. I’m hoping once diagnosed and on medication I will be able to get some kind of life back. The doctors now think I have ms after they thought I had something called adult onset Alexander disease. I go back in September and I’m hoping to be diagnosed so I can start treatment.

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Did they perform at brain, cervical, and lumbar MRI on you? My guess is yes based on your info but any noticable lesions or gray matter problems?

    • @paulkeelan7465
      @paulkeelan7465 Před 3 lety

      @@NeuroNerdyX yes I have what they called “white matter” on the brain.They did lumbar puncture which shown bands. So they now think I have ms. Just hoping I get diagnosed in September so I can get on medication.

  • @SO-te5cl
    @SO-te5cl Před 3 lety

    I used to have all of that before finding czcams.com/video/EHVXJpDBcmU/video.html

  • @mariankiely3995
    @mariankiely3995 Před 3 lety

    Just had my first 'full' infusion the other day, feeling good (can't stand the heat either but here in Ireland it rarely gets above 25 degrees so that's good for me 🤗) good to know that it could take a while before things really improve so onwards n upwards💃🍀

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Great to hear! Good luck with it. :)

  • @CardozaTube
    @CardozaTube Před 3 lety

    Perfect! Thank you very much 🙏🏼🙏🏼🙏🏼

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Use the link in the description for access to the Clubhouse event. Thanks!!

  • @davidgilbertson89
    @davidgilbertson89 Před 3 lety

    Hey Cliff [sp?]! Saw this video while browsing then I watched your others. Glad the Ocrevus is working for you. I was Dx'd with RRMS last June (when I was 49); had my initial Ocrevus infusion in October and I'm getting my 2nd next week. I'm smack dab in the middle of California where it's pretty much 100 between June-Aug. Guess we will see how that goes. Oh, and I ordered an e-bike, too. Seems like we got some things in common, so I'll be excited to ride along this journey with you! Take care!

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Great to hear from you David. I hope it works out well for you. My heat intolerance is much better when the Ocrevus is within the first 3 months, after that, not so much. Please do come back and let us know how it's working for you. Have a great week!

  • @deegrey5121
    @deegrey5121 Před 3 lety

    I have PPMS and I’m on Ocrevus, every 6 months, but I find it’s the side effects of O that return a month before my next infusion...not necessarily my MS symptoms. It happens in the exact same order as the first month’s side effects...first it’s stiff or ’concrete neck’, then it’s scapula pain, or ‘growing wings’ because the outer edges of the bone are really painful like my body is trying to grow wings (nothing angelic about it btw), then there’s ‘crowbar rib’ where it feels like someone is trying the pull my ribs out with a crow bar... that is a ‘shock you awake’ pain, with a gasp at the instant agony that is a 10/10 pain (and I have a high pain threshold and have had multiple major surgeries with 6/10 unmedicated pain, max!) and then of course there is the ‘nail gun head band’, where it feels like someone has used a nail gun to secure a headband across the top of my head ear to ear. More than a migraine. Lots of ‘tools’ used I know, but it’s the only way to describe this odd yet intense type of pain I’ve never experienced in my life. So I get these side effects, in that order that group together kick my ass for a month after O, then 5 month down the track...’concrete neck’, ‘growing wings’, ‘crowbar rib’ etc...in the EXACT same order when the Ocrevus is wearing off. It’s good that ‘Concrete neck’ gives me a warning that all these are ramping up, but weird that it only started and only happens after and before Ocrevus. So I was wondering if this type of pain perhaps is specific to my Ocrevus interaction with PPMS lesions and their location, or do they happen to other PPMS Ocrevus patients as well? Doctors have said ‘musculoskeletal pain’ can be a side effect, but that is vague, and mine is oddly and harshly specific. Thoughts?

    • @deegrey5121
      @deegrey5121 Před 3 lety

      I’d like to add that my PPMS is stable, with no new lesions, and some have even shrunk...so I put it down to the more painful Ocrevus is, the more Ocrevus is working.

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Wow, great description of the strange side effects. Yes, the scapula pain is weird. I get that too! It seems especially sensitive to heat and during the crap gap. Thanks for leaving a detailed comment. We are not alone!

  • @jwerner79
    @jwerner79 Před 3 lety

    Diagnosed 1997 and then 6 months later also diagnosed with l h o n Worst exacerbation popped up 2015, which is actually when I went what most people believe or call vegan I am on a diet because this is a gut disease, started out studying the practice of Dr Roy swank and his practice was moved to Dr McDougall although I never met them, I just studied what they found in their research

  • @nomadic8577
    @nomadic8577 Před 3 lety

    Heyy it’s my birthday on 28 feb 😜😂

  • @nomadic8577
    @nomadic8577 Před 3 lety

    Hey brother, thanks for the video first of all. Secondly we should always be thankful to god and i was diagnosed year a go. This was the second video i just viewed and your symptoms are similar to mine. I’m on Gilenya 0.5mg and i hate taking it. I lost my job I’m afraid to tell the MS issue to my fiancé because she might leave me thinking I’m good for nothing, sick etc and if she googled it definitely she will. On the other side I love camping and traveling ( who doesn’t ) but unfortunately I’m lazy sick feel dizziness weakness ALL the time specially 3 hrs approx after wakeup my balance has some kind if issue too nowadays despite my MRI reports shows no progression since one year ( thank god ) I am barely capable of doing anymore jobs literally any job I’m an aerospace engineer and now I feel working as a security guard for parking lot is also a difficult job for me. I’ve been let go of my job and will appreciate if you can guide me how to overcome my problems. Keeping in mind i live in the world’s worst country with zero human rights and planning to move to Europe with easier immigration so would be great if you can suggest where to move. Thank you

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Hi Ghulam, sorry for the late reply. I just saw this notification. I am very sorry to hear about your experience but it sounds familiar. MS is incredibly hard to live with and I can tell you first hand that it puts a lot of strain on relationships. I feel like the only reason my wife can handle me is because she has an autoimmune disease too and knows what I am going through. Like you, I worked in aerospace for some time, the pressure in the industry is incredibly high and the stress sent my MS spiraling out of control ( I didn't know I had it at that time) but eventually the cognitive issues caught up with me and really started to affect my performance at work. When are you relocating to the E.U.? Ocrevus is approved for use there so that may help. It's certainly not a perfect solution, but it has helped me greatly. Also, I found a cognitive therapist with experience in MS. This has been a huge help too. As for where to move in Europe.. Not sure. I think anywhere with access to the NIH would be a good start in helping getting your MS under control. Have you had a full MRI? Brain, Cervical spine and Lower spine to evaluate the extent of the damage? Keep your head up and put one foot in front of the other. I know it's very hard to stay positive with this disease. You are not alone in this fight though it may feel like it.

  • @shannanemitz8328
    @shannanemitz8328 Před 4 lety

    The Crap Gap is real. I have decided to stop Ocrevus and go back to Tecfidera due to the severity of fatigue, nausea, and headaches the Crap Gap has caused. This started 4 weeks before my next infusion. I also had very similar symptoms the week following my loading doses. I have heard it works great for others, but not for me. Good luck.

    • @NeuroNerdyX
      @NeuroNerdyX Před 3 lety

      Thanks! I tecfidera has worked well for you then?

    • @deegrey5121
      @deegrey5121 Před 3 lety

      Did you wait for any results before you stopped Ocrevus? My painful side effects kick my ass, but my results are MS is stable, no new lesions, with some lesions shrinking. Despite the pain I would never give Ocrevus the flick despite the painful side effects. Results outweigh side effects completely.

  • @StephDespiteMS
    @StephDespiteMS Před 4 lety

    I'm on Tysabri and didn't know much about this medication, thanks for the info! I stumble on my words too! That's MS for us lol

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      How has Tysabri been working for you? how long have you been on it? I'm curious about the longevity of these DMTs. Thanks for the comment!

    • @StephDespiteMS
      @StephDespiteMS Před 4 lety

      Am I Trippen I've been on and off of it for a few years I think now. Horrible I know, but no positive test for pml yet - bonus

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      @@StephDespiteMS does it seem to help with the fatigue?

  • @simpleforging3339
    @simpleforging3339 Před 4 lety

    great video, quite hopefull. I get my first infusion on the 29th. A lot of your stories of past adverse episodes sound quite familiar and I hope the Ocrevus helps. I was all good (relatively) with the MS til 3 years ago (diagnosed 15 years ago). Now I'm largely bound to our property

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      I'm sorry to hear about your limitations. Do you mind if I ask your age? Mine didn't get really really bad until I turned 40 but I had been seeing specialists since 2007 and no one could figure out what was going on.

    • @simpleforging3339
      @simpleforging3339 Před 4 lety

      @@NeuroNerdyX I am 48 now. I worked as a construction surveyor but had to quit my salaried full time job once my limp became a consistent feature. Fortunately my wife has a good job and I do what I can to manage our 9 and 11 year old sons. It was roughly 2004 when I had a bout of optic neuritis and that started the journey. It never really slowed me down at all until recently but now it's got me. Thanks again for your overview

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      Simple Forging please keep me updated. I hope it works as well for you as it has for me. Best of luck.

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      @@simpleforging3339 how did your infusion go?

    • @simpleforging3339
      @simpleforging3339 Před 4 lety

      @@NeuroNerdyX hard to tell most days. We've got 11 and 9 year old boys and my wife is ... Just trying to keep it all together :)

  • @PrzebiegunowaniTV
    @PrzebiegunowaniTV Před 4 lety

    A woman talks about the natural method by which she cure multiple sclerosis. czcams.com/video/g5ZKbH4L054/video.html

  • @Salvatore-1980
    @Salvatore-1980 Před 4 lety

    Glad to hear that your doing well. I was in the hospital for a week in april2019 because of numb arms, foot drop, bad balance, fatigue and confusion..I couldn't remeber 90% of that hospital stay untill 2 weeks later. After 1 month I remembered every test, drug doctors,nurses and even the crappy food. In the hospital they said I had acute disseminated encephalomyelitis(ADEM) its kinda like MS but more aggressive and hits you fast and hard. The good thing is if the attack doesn't kill you then after 6 days of IV steroids you can go home and feel normal again within 4-7 weeks. Also unlike MS ADEM is not a life long illness. In july2019 on a follow up with the neurologist. I said I feel much better then I did in april but I still can't do my physical job and I can't even ride my bike for 2 miles. Normally I bike 25miles evey day after work then hit the trails on the weekends. The fatigue, my shitty balance and the heat intolerance says NOPE. Not happy this summer😢 The neurologist said you should've been back to at least 90% ...lets do another mri... August 2019 officially diagnosed with RRMS😢 Neurologist said your MS is aggressive you gonna what good drugs....looking at all the spots on my brain and spine give me the hard stuff..Neurologist said not a good idea for u to take tysabri because you tested positive for jc virus😢... Lets try for Ocrevus👍😃 September 2019...Insurance DENIED OCREVUS😥😖😒😠 Appeal process has started my neurologist is confident that I will get this treatment with no out of pocket cost😀 Thanks for the videos...I wish you all the best on your MS journey.☺

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      Thanks for the info. Yes, not being able to ride is just awful. It's soul crushing. Have you contacted Genentech about their Ocrevus assistance program? It's a great program. Lmk if you need more info. As for me, doing well but now looking to invest in an electric bike (something I thought I'd never do). Keep us updated on your progress.

    • @Salvatore-1980
      @Salvatore-1980 Před 4 lety

      @@NeuroNerdyX Thanks for the advice but being on insurance through the government they don't accept help from the drug companies unless the company covers 100% of the cost.... I've been unemployed since april2019....Hopefully my great medical team here in Detroit can get me approved.. I love my country but the government and medical system in the U.S. Is MESSED UP...

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      @@Salvatore-1980 indeed! Good luck!

    • @NeuroNerdyX
      @NeuroNerdyX Před 4 lety

      @@Salvatore-1980 BTW.. I just finished this video about how I've modified my riding to keep cycling with my worsening MS. czcams.com/video/esEfqOaDKjk/video.html