Matt's MS - What it's like living with Multiple Sclerosis

[robertsoniiii]

so many of your symptoms are the same as mine hate we have to share this , better days to you

[shegotlockjaw]

MS sux bro, I just recently got diagnosed with it as well. I started having headaches and got optic neuritis and lost alot of vision in my left eye. weakness in my left leg and shaky left arm, numbness in my left thigh. And my body felt very painfull feeling and high anxiety and tired. Loss of balance and using a cain atm. Had multiple mri's spinal tap, etc. Just finished more Steriod therapy myself, and that sucks.. got me on Copaxone now, just waiting on it now...Dood i feel ya..

[nnrep11]

I would check out a naturopath and cuttingb off sugar. When I cut out sugar, in 3 months the fogginess in my brain went away and my walking was better. I am looking into CCSVI now.

[twidwell]

OK, I'm going back to the beginning to watch all you videos. Holy shit! I've been completely disregarding my reaction(s) to cold lately, and now that I've watched this I realize it's an MS thing! I've been bitching to my friends how effing BRUTAL it is to be cold, how cold it is lately (even though it hasn't been that cold)...I couldn't figure it out. Ugh...one more for the symptoms list.... :/

[mattalleng1990]

@twidwell Its good to keep a symptom list, seriously, cuz sometimes you don't realize that something you are experiencing is a symptom! I write EVERYTHING down!

[jsroc2k]

Thanks for sharing your story and information. I wish you all the best!

[mattalleng1990]

@jsroc2k Thank you!

[ephemerous]

admire your courage. there's a russian idiom/saying. chelovek s bolshoy bukvi. to translate it so it makes sense it means A person whos name starts with a capital letter. that's you. ; )

[mattalleng1990]

@ephemerous I like that, I do get it haha. If I could learn any language it would be Russian because my grandfather was Russian and I just like the heritage, I am also Irish and Mexican but Russian? IDK it's just more interesting to me haha! Thank you for the compliments though!

[bellevue10]

thx for sharing this, blessings

[mattalleng1990]

@bellevue10 Thanks! Glad you liked it!

[sleekcartim]

i have some of the same issues: cognitive, word search / word stumbling, that stiff hands thing, tons of numbness / tingling most everywhere in various degrees, weird things & symptoms that come & go, slow walking after sitting for some time, or when tired. depression, anxiety (makes it hard to sleep) etc... it's been a real hard year for me, very tough to get motivated to anything too, theres some great MS vloggers, who help lots, so THX! p.s. dont stop!

[mattalleng1990]

@sleekcartim I feel yah, its been a rough one for me to. If you do any reading you should check out my blog mattsms .com because I just wrote about the staying positive and motivated thing!

[sleekcartim]

@mattalleng1990 i will. im watching all ur vids. like ur inspirational ones too, it helps. ever had numbess / tingling on one side of head? i have it rarely, also feels kinda cold. Im sick of ppl (docs esp) misdiagnosing / judging me. takes a lot outta me, that limbo feeling of negative(ish) test results (first round) & KNOWING i have MS is intensly frustrating. Ive been through testing hell for long time, im tired bro

[mattalleng1990]

@sleekcartim I have that right now, I cant vlog about it because my camera broke so just working on my blog mattsms com. The left side of my head, ear, some of my cheek, part of my neck, a little of my chest and should, and my left hand are somewhat numb/ pins and needles. It bugs. And yeah I feel yah on the diagnosis crap, just hang in there, Im sorry.

[sleekcartim]

@mattalleng1990 One thing docs are not good at is seeing the big picture, paying attn to ALL the symptoms. feel like I know more than they do? SHIT! havnt had a few of the "typical" MS symptoms like: eye sight probs, serious trouble walking, but suffer from most everything else, they act like MS symptoms have a specific script... UGH! sorry im venting

[mattalleng1990]

@sleekcartim No I feel yah and I agree with every word you just said, they are just patching the leaks in the pipe rather then figuring out how to shut off the water.

[Paleksandar]

I have no MS till now all tests are ok MRI,blood proteins, but need to do nerve velocity for 30 days so we will see.. Doctor suspect it is poly miositis and I am confused all I know is when I had this Epstein Barr two years ago or MONO my life is not the same sometimes I am ok and after go weak and all repeats just madness ! If this virus is so dangerous why they didn't find fucking vaccine like they gave me for lot of shit diseases when I was a little.

[Paleksandar]

And I have only 27 years ! Virus Epstein Barr is the most ugly thing on this planet ! All because I had mono, all this torture ???

[Paleksandar]

When I go to shower under hot water my muscles are even more heavy. All this occurs some period and after I feel better, but not for a long time.. I need to do nerve muscular velocity for 30 days but I think it will be fine too. Maybe I have CFS ? Because for MS they didn't find nothing.

If this continues I will make suicide or I will go to bank to steal some money for steam cell.

The steam cell team told me I have a good chance for recover so I can not take this anymore I was strong now old

[mattalleng1990]

@Paleksandar I think a lot of us have thought about suicide but you have to let your pride win this one and not let MS get the best of you! But that all sounds horrible! I had mono as well, Epstein Bar is very interesting.... Hmmm...... Just hang in there!

[Sindica111]

@Paleksandar to everybody here don't fucking commit suicide!!!! your life has value, even if its hard to find it the way you are feeling now; dont give up please!!!

[Paleksandar]

I have also this symptoms lips, legs and arms were numb, feel dizzy and can not eat.

But they find me a Epstein Barr in second faze IGg was high. After five months I start to feel again lips, hands and legs when IGg falls down. It past two years and still I am not like before, sometimes I feel dizzy, feel weak legs and arms and also soft like I am old,done MRI of head is good, blood tests are fine kreatine kinase normal level, EEG ok , but still I am not ok I have fatigue sleep hours,head pain

[TheMztgood]

I have the same problem with the cold!

[mattalleng1990]

@TheMztgood NOT FUN!

[561400]

Hey man u should go on Someonelikeme.ca its a blog spot for people with young people with MS, I use it to.

[mattalleng1990]

@561400 I always hear about that site, I think I have been there but for what ever reason I am not part of it haha so I will have to check it out again and see what's up.

[sandrakayjaynes]

im 15 and have ms i was diagnosed with it two months ago my drs are Dr. graves and dr. greenburg they are really good doctors and i have been on steroids and and many other medicines now im on an injectable called rebif for ms

[mattalleng1990]

@sandrakayjaynes How are you feeling on the rebiff? I am thinking of trying that one next cuz I have not had much luck with the copaxone... Man... 15.... I couldnt imagine, It was hard enough to deal with at 20. Are you on facebook?

[561400]

@sandrakayjaynes Hey man I was diagnosed when I was 15 to, i am 20 in January..I know how hard it is to deal with this shit, if you ever need to talk or need advice, inbox me i will send u my facebook name & everything, stay strong.

[VFVZ]

wow - your recollection of the facts were really well-described. I'll check your blog out next. Hope you are well. V

[mattalleng1990]

@VFVZ Thanks haha wish it was that clear right NOW haha....

[mattalleng1990]

Hi Nikki! Yes Ill look you up right now, I have an entire private MS group set up, lots of cool people! for anyone else reading this if you visit my blog: mattsms.com you can click on the giant facebook logo on the right and it will take you to my page!

[nikkiboful]

Hi Matt, I enjoyed your video.I just started my copaxone about 2 weeks ago and so far so good!!!I would love to get with u on FB and talk with your other MS friends!!! can you find me somehow on FB, its Nikki Booth lives in columbus Ohio!! thanks matt

[TheVillain365]

excellent vid, thank you

[omgsonnyx]

I WANT TO BE YOUR FRIEND SO BAD! HA. i was diagnosed feb 9th so like 2 months ago I am also 20, I luckily havent gotten drop foot yet, but i was walking like i was drunk and i had double vision and sent 6 days in the hospital and tons of tests and things, still waiting to get my meds though. luckily you have it. I have a ton of lesions on my brain and spine too. happy your on meds and youre working on slowing it down. how are you doing now?

[mattalleng1990]

@omgsonnyx Hopefully you can get on meds quick! Ill email you my URL so you can friend me, I have a pretty good group going on facebook of MS friends :^b look me up "Matt Allen" Ill send you a link to so it's easier :^b thanks!

[Hachiban08]

I wish my doctors were more steadfast than yours. My doctors have been screwing around with me for about 2 years. They ruled out everything but MS, so the said its unofficial, and I have a majority of the symptoms, and I also have the lesions too. I'd like to get in touch with a ms specialist so they can help me out more, maybe at a university or major medical center. I'm the opposite, I feel heat but not cold. Thanks for the video!

[mattalleng1990]

@Hachiban08 sorry for such a late response, youtube didnt alert me that i had new mcomments, anyways, have you had a spinal tap yet??

[mattalleng1990]

@Hachiban08 my doctor was quick to diagnose but has been the worst neurologist ever.... I just switched neuros and am on a waiting list to see a specialist at loma linda. can't wait to hear and EXPERT'S opinion....

[mattalleng1990]

I have felt pretty good with the energy lately I have to admit! I can almost jog! The only thing holding me back is my leg's coordination but the energy is there, and yes, the injections are getting less and less painful, just part of my daily routine!

[CeliTan7]

Very well said. Stay positive. The Copaxone injections get easier with time and they are basically painless. It took me several months of taking Copaxone to finally start living well again. I mean with PURE ENERGY-like the good old days. Maybe you'll get there sooner. Best of luck to you. Keep posting.

[mscavsfan]

thanks for defining and explaining drop-foot.

[mattalleng1990]

@mscavsfan no problem, thought it was an honorable mention, wish i could have been more technical regarding the muscles but i blanked out lol

[mattygood]

Hi Matt before you have many more attacks and your deficits accumulate please research the diet alternative. I suffer primary progressive ms and nothing was helping until I started juicing (green vegetable juice) and paleo diet no gluten, eggs, dairy, legumes or yeast. The diet is a massive adjustment but multiple sclerosis left unchecked will also make a massive adjustment to your life anyway. Trust me the diet thing definitely helped me and has helped many others. Best of luck mate Matt G.

[mattalleng1990]

@mattygood hi, I have actually been researching and starting on an anti-inflammatory diet, reduced red meats, reduced animal protein, reduced dairy, lots and lots of fruit and veggies, no junk food, no soda, no caffeine, etc. I've read everywhere that dieting is major when it comes to MS so I have been doing research online and I have a few books that I will eventually read when my eyesight gets better. I'm glad to hear it's working for you, dieting is definitely hard

[mattalleng1990]

@mattalleng1990 that easier it is for me to motivate myself to stick to it, so again, thanks. I also need to look into the paleo diet, everyone talks about that one so I'll check it out.

[guitarobsessed85]

@mattygood When you found out you have primary progressive were your symptoms very mild and then increased over a period of months? I have yet to get my mri but I'm scared it may be the progressive type since it has been 3 months. I went from having warm water sensations to now having slight tremors that come and go and have become more frequent and body vibrations. No strength issues or trouble walking but it's only been 3 months. I have lhermittes sign every once and a while.