In the mode of so many others who have posted touching and amazing "my MS story" videos, here is my own story about having multiple sclerosis, finally getting a diagnosis, trying to figure things out, and making my way through the puzzles of this disease.

UPDATE: I've posted a follow-up to this video, one year later. The "18 Years In" video is here: https://www.youtube.com/watch?v=qhQLzv67Nlc

UPDATE: My video two years later is here: https://youtu.be/7I0ujnOqDfk

My MS blog is here: http://metaspencer.blogspot.com

My video about keeping track of MS exacerbations is here: https://www.youtube.com/watch?v=x3QvY95A25A&t=549s

One revision: In the video, I say that I had a palsy of the 5th cranial nerve. It was actually the 6th cranial nerve.

Find and Follow me on:
✯ Instagram ➠ https://www.instagram.com/metaspencer
✯ MS Blog ➠ http://metaspencer.blogspot.com
✯ Patreon ➠ https://www.patreon.com/metaspencer

Feel free to share my videos … and thanks!

Multiple Sclerosis Monday-  Being Diagnosed with MS

The journey towards my Multiple Sclerosis diagnosis ends with this week's video! This week you will learn all about the tests that helped the doctors reach my official diagnosis.

Keep in mind- MS isn't an easy disease to diagnosis because of the oodles of symptoms hanging out under the MS umbrella. Which is why all of these tests were important.

1- Physical tests
2- MRI
3- Spinal Tap / Lumbar Puncture
4- EEG
5- & oodles of questions

Last week's video- http://youtu.be/tqOLUiBBmoE

*NOTE* I am NOT a doctor! I am sharing my experiences with you because having MS can be incredibly overwhelming.

Find more stories about my life with Multiple Sclerosis here- http://horriblehousewife.com/?tag=multiple-sclerosis

Donate to my sister's MS Walk- http://main.nationalmssociety.org/site/TR/Walk/MIGWalkEvents?px=12918211&pg=personal&fr_id=23461

Be sure to subscribe so you don't miss future Multiple Sclerosis Monday videos!

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34 Responses to My MS Story – 17 Years Until a Diagnosis

  • Bri Swifty says:

    I'm in limbo right now. It sucks. Tests so many tests. It's so annoying.

  • Linda Ferns says:

    I'm looking forward to have stem cell transplantation in ms treatment clinic belgrade. I want to try anyway this kind of treatment.

  • Fernando Abenoza says:

    Fernando Abenoza. I had a bad case of MS, after 6 years of studying Orthomolecular medicine, I learned the approach to recover from MS is to repair the Myielin covering the nerves,. I took daily Vitamin B12 in shots or under the tong. , this is because the intrinsic factor in the stomac is not transporting the B12 to the Elium, to be absorved, and eventually we develop the MS…..I had Bone brocth, the Marroe is the best collagen, and also the basic element to rebuild the Myelin already damaged,, take vit C 2000 mgs, Carnitine and Creatine, Zink Magnesium,, MSM and Turmeric for inflamation., this is the only way to recover from MS. ..I recovered.
    Reply ·

  • Olga Mesh says:

    |Do you drive?

  • Brianna Coffey says:

    I have all the symptoms of MS, except vision. Waiting to see a Rheumy, Neurologist, and a MRI. IM A HOT MESS, HELP!!!!!!! I hurt everywhere, but mostly my arms and legs. Im a photographer and I havent been able to book sessions in 2 months.

  • Lee Sybrant says:

    I'm in the process of looking for ms/lymes. I have my spinal tap this Tuesday with a 2 hour MRI. Thank u for your video

  • Keith Hutchins says:

    I go to Seattle on the 8th to get my full MRI, and evoked potentials test done, and I'm scared to death! If you can say anything to ease my mind I would really appreciate it! Thanks for taking time to make these videos.

  • Barbara Brand says:

    Be sure to get on The Swank Diet and Lifestyle. There's a great closed group on Facebook for MSers who are on it. I've had MS for 23 years, on the Swank for 22, and still fully mobile and active!

  • Vanskii says:

    So if they find something on a EEG test and then have to wait for CT scan. Say they found a lesion does that mean you're automatically diagnosed for MS? Or do you have to do a bunch of tests?

  • Lara Kristin says:

    Thank you for filming this video & talking about MS & your symptoms! We all have to speak up & talk about what we're going through! I'm also talking about my MS in my videos! Sending you support from (currently) Thailand! Enjoy your day 🙂

  • Englehard Dinglefester says:

    Great story I got a lot out of it.

  • Tuc says:

    I don't want it so I don't have it.. This we a reoccurring thought in my head.

  • tina luck says:

    you have come a long way from this video Happy New Year

  • Edita Charvátová says:

    How are you doing these days? 🙂

  • elysiq decker says:

    I share your symptoms and I'm unfortunately too pregnant for scans right now. But I was told functional neurological disorder by U of M. I'm just not satisfied but I guess having problems walking , seizures and talking funny and my scare of stairs is what it is.

  • Amanda Peterson says:

    You are such a joy to listen too. I'm just beginning my journey of a possible MS diagnosis. And I'm hoping it is all in my head, even though these symptoms are real. Sometimes the symptoms are excruciating but most of the time they're mind-boggling, frustrating and annoying. And it's taken about three and a half years for a doctor (I changed 3 times) to even listen to the symptoms that I'm having so I've been in misery this entire time. I appreciate your time and consideration in putting more personal information out here for everyone. Especially your personality and spirit. You can see your heart on the outside of your chest and it's upbeat, positive and beautiful. Thank you.
    I hope you put up more videos of your Journey 💕💋

  • Michelle Jorgensen says:

    Ack!!! I go Tuesday for my emg… right after mri … scared to death! I hope I take it good. I pray no but I can’t stop tremors in right hand and it’s bad when I work. I throw my scissors 😂

  • Liberty West says:

    Been going through lots of crazy symptoms past four months- Dr has mentioned ms twice ! ( at one point I went to Er because I thought I had a stroke – ct scan was fine then everything’s gone down hill ) but I was put on antibiotics for 21 days ! Almost done things seemed to get better until two days ago until a major stressor popped up ! My feet and hand have been pins and needles for two days sleep was messed up etc .. think the dr was on the right track first time she talked about ms ! Back I go next Friday !
    Thank you so much for sharing throughout your journey ( watched a lot of your videos today )

  • ZaKari Perry says:

    Pretty nervous.. had vision problems last few days.. Opthalmologist did a MRI .. showed some crazy stuff at the back of my brain.. talk to another doctor tomorrow.. this time a neurologist. I'm taking note of some of what u said to ask the Dr. Tomorrow..wish me luck

  • Sleekcartim .sleekcartim says:

    I have several things in common with you… I had similiar numbness & tingling on & off, other easily explained away stuff too for years before shit got serious. I still dont have a DX, 2 years of being a pin cushion made me crazy, 7 MRIs, 2 years of constant doc (sifting thru bad docs & BS) appointments, 2 botched LPs (yeah i totally understand your freak out there)….I had to stop cuz my sanity & health (from being in that system… stress) was a stake. One Neuro told me i didnt have MS cuz i only had 3 lessions in brain, another doc said "i thought only little girls got MS". I know i have MS, symptoms dont fit anything else. I never went on meds, ive depended on health hacks to keep me from having another flare in several years. I routinely embarrass my docs with hacks, they dont want to hear about them. One thing everyone should be doing no matter what is that you have to be your own advocate! Do your homework, experiment with everything, something will help. Docs & profit driven big pharma DONT always have your best interest at heart, its scary AF when you discover that! Big Pharma is EVIL & they help train / manipulate docs so…. #IndoctrinatedDocs P.S. check out this vid, it will blow your mind but you never hear about it in news….i wonder why Hmmmm https://youtu.be/KTFicgrVk0w

  • mikesPOTCO says:

    I'm thinking I might just be a hypochondriac

  • BillyLee85 says:

    Hi thanks for your video! my situations is similar: i have a lots of neurological syntoms from 11 years, recently i did brain+spinal cord mri and VEP's. All come back clear! still have no diagnosis!

  • Michele Haime says:

    OK HERE IS WHAT I KNOW !
    I AM A BIT OLDER THAN YOU ,I HAD SAME ISSUE'S FOR YEAR'S. I ACTUALLLY JUST SAW AN INTERNISTS ,AND HES ALSO A TOP CARDIOLOGIST! NOW ,HE SAID TO ME OK YOU QUIT SMOKING' IN JANUARY, AFTER ALL THOSE YRS , AND I TELL YOU RIGHT NOW ,IF ITS MS IT , IS REVERSIBLE.!
    HE CURES HIS MS PATIENT'S, BY ASKING ME TO WATCH 3 DVD'S ON NETFLIX!
    OKAY!…SO WATCH THESE …
    DRS ARE MAKING A FORTUNE ,NOOOOOO, PLEASE TAKE IT FROM ME ,I AM NO LONGER IN A WHEELCHAIR ,BECAUSE I WON'T TAKE THIS CRAP! YES YOU ATTACK IT WITH DIET !
    YAY! A VEGAN!
    NOW IM GOING TO SAY SOMETHING THAT IS NOT INTENDED TO UPSET ANYONE OUT THERE, BUT YOUR MIND IS SOOOOO POWERFUL, THE SECOND YOUR SPIRIT, YOUR SUBCONCONSCIOUS IS BELIEVING IT .EVERY THOUGHT IS ENERGY !IF YOU TELL YOURSELF YOUR UGLY, SICK,POOR, YOU ARE ATTRACTING EVERYTHING AND EVERYONE INTO YOUR LIFE.WATCH THESE VIDEOS ON NETFLIX!
    FORK'S OVER KNIVES
    ROTTEN
    THE BLEEDING EDGE!
    NOW THE FACT THAT YOUR A VEGAN IS EXTREMELY IMPORTANT.
    I WAS TOLD NO MEAT, NO SUGAR, NO DAIRY!
    STAY AWAY FROM ALL CH FOODS! I PAID 5,000 FOR THAT IN BOSTON MA.
    CHICKEN ANTIBIOTICS
    CHEESE DYE'S
    CHINESE FOOD MSG
    CHOCOLATE
    CHIP'S CHEESIES
    CHEMICALS
    All of it ! Migraines were so bad ,that I quit all DYE'S !
    Guess what?My son was so sick ,no energy ,chronic allergy's, tired all of the time. Now the DRUG Companies are keeping us sick! Watch the 3 video's. ( Essure ! Lord if ANYONE has a IUD, Essure, any hip ,knee, car accident parts, watch
    The bleeding Edge! Oh this will piss you off! 3_4 million dead last yr alone!DR'S scamming under tables! Some woman out 2+ 2 together and said on Facebook, is anyone Else who has had hospital part's, knee,hip,etc,noticed anything wrong with them ,bodies mind, and spirit, speech balance?
    Yep cobalt is CAUSING 33 yr o!D's Parkinson's, dementia, and Alzheimer's! I'll leave it here for now til you watch those videos!
    ANYONE who tells you cancer is impossible to cure!Nope!
    Essiac Tea !
    Vitamin B17 D3
    Heart Surgery K2 D3 !
    I accidentally left my BOUNCE SHEET'S at our camper.
    It was the first time, it wasn't chewed ,or torn apart, we bought it only 3 yrs old, but the mice hated the regular BOUNCE SHEET'S!
    If it was repelling mice , What was it doing to my children?
    6_7 months, chemical Free house, no fluoride, no stuffed animals, kapok, smoke, he was off needle's ,his Marks went up ,and my kid's EAT 20_30% VEGGIES, 20% fruit smoothie ,fresh, chia ,flax, if I had continued GMO ,processed foods, MEAT, dairy and sugar! No oil.
    I am trying chia and flax.
    Chia to lose weight ,after I quit. Start smart.
    Meds are killing us !
    Chemotherapy and radiotherapy are carcinogenics!
    A boy age 3 in hospice ,says take home to die .She took him home ,and she juiced swiss chard, mustards, collard greens,kale ,spinach. He was dying of stage 4 .That was 5 yrs ago.!God made plants ,Herbs, for a reason !
    Meat is full of Antibiotics!!!!
    Kids r getting period's at 7_8_9
    Men r coming on to them because they look 18! Its processed foods!
    No pesticides or insecticides ok!
    I'm SHARING this because we all need a wake up call ,and I'll be damned if I say ok dr and wait to die,because I believe I've lost everything! I want to attract the right Master Herbalist .
    This is my body reacting to something. Your not
    DEFECTIVE! OKAY! I CAN'T ENDORSE ,I AM SAYING TRY THIS ,PLANTS ,HERB'S,ORGANIC , STARCH SOLUTION WHY?
    PROPER NUTRIENTS YES.

  • Gina Baggett says:

    I’ve been diagnosed with MS and I use high amounts of cbd and thc and for me that helps me IMMENSELY!!! I wouldn’t be able to move without it. It helps with pain and inflammation, and great job with the vitamins, vitamin d and your food! That and exorcise is so important but for real I will beg you to check out cbd and thc and even if you don’t like the thc atleast look it up along with cbd that doesn’t make you high

  • a os says:

    I made my ms story after i saw yours. I gonna watch a bunch of others to, to see how everyone deal with it.

  • Jorge Castillo says:

    Good energy unfortunately some DMD’s didn’t work 4U therefore directing you and others to stop scientifically attempting to protect remaining neurons. Take Care and Be Well, just one day at A TIME

  • Jameica Jones says:

    I've had multiple mri's they have found lesions on my brain but not enough to diagnose me with ms. So they say. Then i also have seizures, I've seen over 5 neurologist only one has actually given me a diagnosis with MS.. I'm not doing as well. Now my back is really giving me so many problems.. they claim it's from spinal stenosis but all of pain is only on one side, i also have eye and ear problems on my left side, face tingle and goes numb on left side…i have flare ups often, some are so bad that i can barely move.. it even bothers my tongue on one side.. vagina goes numb, left but cheek,.. everything on the left side.. so idk at this point what to do

  • Joyce Nohner says:

    I have had MS for 22 years, I have used 3 different kind of shots & none have done anything for me but negative things, then one day I told my DR that I wanted to try the newest drug out there, he was a little hesistant but finally gave in & prescribed Pledgrity, it was wonderful, it took me out of the wheel chair and back to walking again, now I am active again, but I can't run & play with my grandkids that makes sad because thats all that kids do & also I had to give up driving, thank God I have a good partner who takes me anywhere I want to go, my mind still gets confused easily but I manage

  • Jennifer Price says:

    I have MS as well. Ty for sharing.

  • Debbie Oliver says:

    Look up the medical medium Anthony William he is amazing his books are on Amazon and he's currently got a radio show on sound cloud. The cause of Ms lupus Lyme disease ect is viral related it's the Epstein Barr virus you can heal this naturally with fruits veggies and supplements please look him up he's changed my life 💕💚💕💛💕

  • Jennifer Vetri says:

    Hello! Thank you for sharing this. I have not been diagnosed with anything but have been having weird symptoms for a long time now (I'm 33). Well, I've been diagnosed with Fibro, but anyway…Was wondering if you could tell me what they called the lesions on your spine? Thank you!

  • tracey johns says:

    Thanks for sharing your story 😊 Hope you're still feeling good and up beat. Apart from the obvious benefits of a diagnosis bringing forth the answer to your 17 year mystery and the possible treatment paths. Would you say it's been beneficial to you learning the diagnosis? I am only asking because I am going through a similar situation. I am doing the 'ignore ' thing predominantly. Since I don't know why I have the symptoms I'm getting other than a very woolly ' probably fibromyalgia ' but I am not sure whether to push for tests or just continue on and try not to think about it. I have just had bloods done and they're all fine 😊 but I haven't had any other sort of diagnostic tests. I guess if I am watching videos of this ilk I'm clearly not doing a great job of ignoring 😕 I tend to look for answers when I am feeling rough, then forget about it when ok.

  • Melissa Walker says:

    I have had multiple medical people in a couple different fields suspect MS but, as of yet, remain without a diagnosis. Would you be willing to share who you saw at the MS clinic?

  • Damien J Dunne says:

    Brother don't worry about it being your 3rd take, thank you so much for sharing your story!

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