Видео

Thank you for your video

docs.google.com/document/d/1HrxaT_Lwdzhgyo00Pm_obDIjRExrXWbs9IcxBlr1RJA/edit?usp=drivesdk

I love seeing Allan looking the same as when we were kids. I’ll be seeing you soon friend. Long over due. I’m sorry.

Great video thanks for the info 👍 …Trump2024 😂

Great vlog Alex! Btw I love the peacock. It's like a gazing ball, only better.

Where were your lesions located? Did you have any on your spine?

Check into hsct for ms. I had it done and my symptoms have improved. I also don't need to take ms meds anymore.

Thanks for your video. It was fun watching it! My diagnosis was 40 years ago, of r-r like yours.

How do you get a full diagnosis if you have a medical device implanted (nerve stimulator for pain) and cannot have mri’s? I am trying to get someone to be willing to do a lumbar puncture (fun), but that alone will not meet criteria.

Thank you for time stamps

Alex!! Its looking so good!!!😍I will be coping you and make a wildflower garden. Also what the material you used under mulch and stones?

So nice to see your mom again! :)

Love the garden update - the area you live looks amazing! Funnily enough also gardening here in NL :) Have a garden plot close by where i'm growing tons of veg! This years goal: become self sufficient in garlic xD I might have overdone it a bit... hope you are doing wel Alex :)

Hey Alex,hope you are doing well :) A vlog with you're bro and mother again would be great.

Oh I forgot. I got a coolify off Amazon w/ HSA $$ and work in the yard in the heat. It's a cooling fan and awesome. We MSer's have to stay cool.

Hi Alex- music is great! Best to you on your adventure 👏👍 Planting planting here in Colo Just blooming peony- yay!!!!

I just got my diagnosis less than a week ago. Seeing so many different stories and experiences has been so helpful. Even if they are from a year ago. Understanding that it’s different from person to person also helps me to explain it a little more.

So nice to see you back. Greetings from South Africa

Hey hello,we've lost you.I hope your blood test went brilliant.My MS update is that in January a person that Ive met in the hospital that I went for my infusion had a very aggressive type of cancer and unfortunately he died.I was saddened from that and I stop my clinical trial.After two days it turned out I worsened my walk and my vision gets worse from January.I tried to get back in the clinical trial but the company refused cause the trial has to be blinded and now I know so much.Ive changed doctor and I have blood test and we found out that my foliar acid and vitamin d is low and something else I can't remember now..The doc said that that things is low cause the drug that I had taken is working inside my blood and it has to get higher to take treatment again.I wiil going to have a blood test again in somedays from now and if it goes well Im starting a therapy again.Its all frustrating but know I know a lot of things about the trial and thats why the company didn't accept me again,Because now I know a lot of things and the trial must be blind about me.Hello Alex again :)

Did anybody have a ‘normal’ mri but symptoms continued? My doctor is having me tested for other things but told me MS is still in her list of differentials. Should I push for another mri? Side note: she thinks I also have Ehlers danlos and said that can effect MRI results if you’re laying down?

Oh hun, this is too familiar. I always wondered if there was a connection with the rash and being numb from the waist down. Hope you’re doing ok. I’m 14 years post diagnosis in the U.K.

Thanks for your videos, I do have MS but I do not sweat through everything. Asagai

I want her or read the bending of the leg is in Ms sign.

I'm currently waiting for my blood test results, the exact ones you stated, because of my symptoms. My leg has been numb for years, but I got sick and woke up and the numbness had traveled up to my thigh. It got to my lower back and I went to the ER. They checked me for blood clots, then sent me home. I would like to mention I have Hypothyroidism and PCOS which makes it very difficult for me to lose weight (which they have blamed all my symptoms on so far) I started getting tremors and had to wait over a week for a doctors appointment. I'm very thankful my numbness stopped and went back down to its usual place on my leg. I've got severe itching, sinitus and tingling in my lips, tongue and face, dizzy spells, loss of balance and the tremors come and go. I also had an on-going twitch in my eye for about 3 weeks before the numbness started spreading. Everyone kept of blaming my weight and diet thinking I have a vitamin deficiency (I take vitamins daily and eat fruit and veg and am not THAT overweight) I have had chronic diarea for months which, again they said was because of my weight. I now have a very weak bladder and don't even want to eat most days. Chronic fatigue and a rash on my back and bad back/neck and shoulder pain. my periods also completely stopped about 3 months ago now. I finally found a doctor that believes me and doesn't think it's just my weight. I just want to get on treatment for whatever it is ASAP. The road to diagnoses here in the UK is such a long one as they won't give you and MRI until you are almost dead, apparently. I'm so glad you got seen relatively quickly and wish you the best of luck in the future ❤

Just curious, did this start after vaccination or a viral Infection? Do you have ebv?

Lovely to hear your story alex. Your symptoms were very similar to mine , frightening experience although it makes us stronger. I hope you're doing ok ❤

Just be aware that undiagnosed B12 (& sometimes B1, too) deficiency can masquerade as MS. And people can still be very deficient at cellular level even when their serum test results are ‘normal’ or even high, because serum tests do not show cellular status, nor how much in the blood is active or inactive. If most is inactive, it may look good on the results, but it’s not getting into the cells & the test results are meaningless. Many struggle to absorb or utilise B vitamins these days for various reasons. Digestive issues, PPI’s/antacids, Metformin, etc may inhibit uptake. Antibiotics & other biomedical-decimating drugs & substances may potentially destroy the B vitamin-producing & metabolising microbes, digestive issues, gastric surgery, ageing, Veganism, etc may also contribute. Even young people,children & meat-eaters may develop B12 deficiency if they cannot absorb or utilise it very well.

Thankyou for sharing. And saying symptoms. I had both my legs collapse and I couldn’t stand & my face was dropping on one side. Jan 23. I didn’t follow this up & many more symptoms over years. Very bad vision 17/18 double and blurred which I did see a neurologist who said I am over 50 so it’s not ms. Didn’t ask my anything. I can barley walk now & weakness everywhere. My memory is not great & much more. As I have severe arthritis in right hip awaiting surgery in 2 days I thought it was that. Which shows how gone my thinking is. So thanks for the explanation much appreciated. And the process’s. I am so sorry for loss of Charlie ❤no words are enough when one’s best friend passes away chasing mice around in heaven smiling down on you wishing you healing vibes

Its so good news that the insurance after so many changes at last confirmed your infusion. Here in Greece there are other rules and if you have diagnosed with MS you take the infusion for free. Its different in other countries, I don't know why is this happening..However its good news for you 😊😊. Happy nee year for you, Rosie and your cats and family Alex.

Superr !!!!

Hi again Alex. As my father would say, "you did good!" Sorry about your loss. Merry Christmas

R.I.P alex 🕊🐈🕊

❤

Hi Alex, Well what a very lucky cat Charlie was to have such a really happy and wonderful life with such a good innings lovely. You should be very very proud of yourself. You gave her a wonderful life. Well done Alex.

RIP Charlie! I'm sure you had a great life here on earth with Alex! :)

RIP Charlie 😥😥😥

I hope you are doing well! I missed Rosie 😊 Memory loss is common for us with MS, I know, I'm having some memory loss but likely is small and not important things.I found out recently about the memory loss I'm having but I appreciate it's very rarely and for not important things..dont be afraid of this Alex :)

Did you have EBV as a kid?

Nice to hear from you!

Hi Alex, I really love 💕 your videos. What a truly genuine lovely kind person you are. I have two daughters growing up, and if they turn out like you I will be more than happy. It's a blimin nuisance being constantly ill, but there's always tomorrow and I dare bet you will run into good times soon lovely. Rosie is very adorable, she really makes me laugh. You treat your animals brilliantly. Very best wishes to you Alex all the way over here from the UK.❤😊😊😊

What do you do for numbness and tingling in the hands and feet?

Also a Dr Boster fan. In discussions with the disability company as I am off work moving from STD to LTD and they wanted to know what was being done to resolve my condition. They saw I was on drugs for MS and were wondering when I could return to work- the main issue is cognitive issues and per my neuro psych eval I shouldn't return to that stressful and intense role. It is in accounting and/or ERP system deployments (SAP). So- until I test better- and I'm not convinced I ever will! after 18 years with MS that time may be over- I was about to retire so I am ok with that. I dress like you- but put on a sassy MS shirt. I don't do the benadryl anymore- I changed to Zyrtec and with the sol medrol combo it is bad- edgy and dopey. I changed to 1/2 the sol medrol and Zyrtec instead. I always fiddle on my computer but bring a book. I bring clean snacks (hand fruit and nuts), dress as you do and hot pack my fore arm on the drive in to pop my veins for the IV stick. I had a reaction the first 1/2 and never did again except when they tried the fast infusion- then itchy ear again. Now as I am approaching 60 and stable MRIs for 7 years my concern switches to brain volume so I can switch to Aubagio in Jan vs another round of Ocrevus (Dr Boster recommendation on "deescalate treatment during global pandemic") made sense to me- I can get vaccinations whenever I need to and, etc. B cells should come back within a few years as my natural immune system will be depressed just due to age. While we do qualify to be considered compromised they found we had no greater chance of catching something like Covid and most did just as well if they caught it. We still have our T cells is how my Neuro explained it

So what do you use to treat the symptoms? Am I going to have the tingles for the rest of my life? 😢

I was just diagnosed on the 19th of September 😢 8 brain lesions and three spinal. RR. Thinking of Ocrevus. Tysabri is monthly with a higher chance of PML and I really don’t fancy the self injection or the pills that don’t really work. How do you do on O? Edit: I chose Kesimipta… I love it

Kitties are so important for our wellbeing 😻♥️

I love your beautiful puddycats, Lou Lou and Charles 😻

Do you have the babinski sign? When they run something up the bottom of your feet and the toes flare? It tickles

Thanks for the clip at the end ♥️♥️♥️

❤❤