90 thoughts on “Getting a diagnosis of multiple sclerosis! What People with MS have to say!”

1. I was diagnosed in 2011, my eye doctor told me I had optic neuritis and sent me to a neurologist. The neurologist had me do an mri then lumbar puncture to confirm. Then I was told (by the worst neurologist ever)  that there was no type of long term treatment and I should under no circumstances google MS because it would just scare me unnecessarily! I opted a year and a half later to have a second opinion, and thank God I did, my MS is rather aggressive and that year + being on no treatment was very detrimental to my overall health! I hope this urges all readers to get a second opinion, and find the best long term treatment for them.

2. Does any one have these symptoms?ulnar nerve numb and pain full in both hands,shock sensations when you cough,sneeze or move your head toward your chest.Numb in both legs up to mid back. I have not been diagnosed with anything yet.Had a CT scan so far,negative results.Looking for answers!

3. took from 2009 to 2012 to get my dx but i believe i had it since i was 14 my back likes to spamall the time for no reason and legs would hurt to the point i couldn’t stand on them still get this till this day and suffer from mentalhealth my whole life since then to then at 18 i felt i almost couldn’t open my mouth but just like before it came and left within a day but in 2009 i got a pin sized hole in my lung so they did a ct scan so i asked them to check my brain cuz my mom and sis had ms then they found 5-6lesions so next was a neurologist first one did a spinal tap came back positive for ms dx but since i haven’t lost the movement of a limb for 48 hours or and lesion in the spots conclusive for ms he wouldn’t diagnose me second doc said i was crazy to go see a therapist before i comeback for further testing 3rd doc believed i had it but wouldn’t diagnose me 4th doc was an ms person either with the ms society do knew her stuff by the time i got to get a new symptom arose black dots and lines in one eye that wouldn’t leave in avweek they grow intomy other eye so she ordered aanother mri found one of my lessons moved intomy corpuscalosme she knew then i had an me episode and gave me my diagnoses that’s my story was hell

4. I am just starting an anti inflammatory diet…..watch this space

   • Roxannestanbridge I started working in kitchens when I was 16 and next month I am forty.  I was diagnosed with ataxia from ms 3.5 years ago.  I do a number of things that are anti-inflammatory.  Taking a turmeric pill is the best thing and avoiding all dairy(but I just like cheese so much).. You can eat a bunch of Indian food also, it has turmeric.  I have also used coconut milk in a number of Indian food sauces for years which is not dairy.  I do not know if ginger is anti-inflammatory, it is good for you though.  It is a great anti-nauseator and I think it is also an anti-oxidant.

5. My diagnosis completely blinded me! I was diagnosed on May 2002 at the age of 39 by my 1st Neurologist. I had been having tingling,/numbness off & on for about 5 yes, however, i’d had a prior spinal injury at age 22 (fractured C7 -fused at C6&7- and fractures of T 5&6), but no paralysis:). I assumed my neuro symptoms were due to my spinal injury. But, I was also a work-a-holic & finally went to my to my Neurologist approx 5yrs after my 1st symptoms started. After some testing, he told me he thought my symptoms might be due to MS, but he would need to confirm it with a brain MRI (he had already done my cervical & thoracic MRI’s), & a lumbar phnction. WHAT! I didn’t even know what MS was. So I went home & started searching MS on the net, then I became almost hysterical. I then started connecting the dots . I had been enduring other MS symptoms such as clumsiness, vertigo, exhaustion& the most scary for me were the cognitive changes I’d been struggling with, but didn’t know why. Both the lumbar puncture & MRI were positive for MS. He then started me on Copaxone. I know my story might be a little unusual to the more typical process of it taking yrs. for a diagnosis, & I feel very grateful for an immediate answer. My doc was a godsend & then helped me when I needed permanent disability, I was approved the 1st time (also had a lawyer),

6. My legs used to lock up on me especially walking up hills.
   Falling over an dropping things more
   Pins & needles an numbness in my feet
   My legs feel like I’ve got a pair of soaking wet jeans on and numb from the waist down
   All as my doc used to say that my muscles didn’t work and I’ve got trapped nerves in my legs and the bottom of my spine.
   I was finally diagnosed with MS last Jan 2012 by a locom doctor who rushed me to hospital when I. Couldn’t walk

   • Julia45 Now look up the top 5 hospitals in the country that specialize in MS.  Yeah the wait will be months but well worth it.
     Now what MS does – when our bodies get a foreign virus (everything is airborne now that winter wants in), like everyone else, we develop antiviruses.  Problem is that our bodies don’t know when to stop making antiviruses, which then attack our myelin (coating like on electric wires).  This can happen to any nerve in our body.  Optic Neuritis is common, and spinal attacks are more common than anyone wants to know.  Sounds like the dr you saw doesn’t know this.  Look for those top 5, you’ll be happier!
     ~Marilyn

7. It took my doctors 30 years to diagnose me

8. From my first symptom to actual diagnosis was 7 years.  It was me who said, “I want you to investigate MS”.  After years of being being treated like a depressed attention seeking nut job.  Of course I was nuts and depressed because I knew something was wrong with me and I wasn’t being taken seriously.  That journey started almost twenty three years ago and I am not taking any MS drugs with the exception of two Baclofen.  I find Magnesium far more effective in treating the spasms than any pharma drug has ever been.  I was given somatasensory tests, visual evoked potentials and an MRI….two MRI’s one and a half years apart which is when I got the diagnosis.  I am using a wheelchair although I can weight bear, walk still with a walker and much difficulty.

   • Thank you for posting this! I really needed to read this today after just having a doctor try to convince me I’m depressed. Although I know that can be a possibility, I said the same thing to him. I know something is wrong. Didn’t do any good. He didn’t he do any lab work like I asked. But deep inside, I know I have to keep pushing, because my gut tells me that it’s more than depression.. Thank you for sharing your courage.

   • lauriefharrison 
     If your gut is telling you something please listen to it.  No body knows your body like you do.  My sincere wishes that all turns out well for you.  Although being diagnosed with MS was not what I wanted, it has not been the end of the world.   True my life has taken an unexpected path, but I am still enjoying life, I am involved in my community, and have lots of loving friends.

   • LoriMontcalm  I was just diagnosed with “Conversion Disorder.”  It’s a mental problem.  It’s when one has a mental problem but don’t deal with it properly and your body turns it into physical symptoms (e.g. symptoms exactly like MS).
     However, I feel deep in the pit of my stomach that it’s not my nerves or depression.  Sure I’ve had some issues, like my father recently passing, but that will make you have a “flair up.” From what I understand, everyone’s MS is different, so the way my symptoms are presenting themselves might be different from everyone else.  MS has way more symptoms than Conversion Disorder, of which I’ve experienced.  There’s only a few that have stayed with me permanently. After dad passed I had a new symptom that lasted exactly 24 hrs. and then went away and I haven’t seen it since.

   • kathie1026 LoriMontcalm Hi Kathie.  The reason I was treated for depression was because the doctors thought my symptoms were manifestations of the depression.  I have lived a life of stress, alcoholic mother, physically abusive father.  They also had amazingly wonderful qualities.  I am the youngest of ten children in a blended family.  I just kept getting more depressed when I was not taken seriously.  I knew there was something else wrong, I could feel a change in my body.  I knew exactly when it started.  I kept going away with my sails further deflated only to head back to the doctor to complain some more.  Keep a journal about how you feel each day/week, symptoms, even vague ones…if you think it’s something more, keep at it.  It took seven years for me.

   • kathie1026 LoriMontcalm 
     Do yourself the favor of looking up the top 5 MS hospitals/doctors in the country, here on the web.  Find the closest to you, and make an appointment.  Have all MRIs and other medical records in your hands/sent before your visit.  Slightly obnoxious but well worth the wait.  You want real answers and going to the best in the nation is heading in the right direction.  
     Good luck to you!  May your lingering questions be answered!
     OH and happy holidays!

9. My neuro switched me to Tecfidera.  After 20 years of stabbing myself I was thrilled to pieces!  However by the time I hit week 3 Tec gave me the runs for 10 days.  My nuero said to take trhe weekend off from Tec and try starting again Monday.  Weekend was great.  By Monday afternoon I was back in the bathroom with the runs.  He asked me if I wanted to try Guilenya or Aubagio.  I looked up the side effects and decided I like my hair/vision/blood pressure too much to try Gilenya and Aubagio also has its own nasty side effects.  Thanks I have enough problems where medications that adding more problems doesn’t seem logical.  Until the medical community figures out how to make those side effects less damaging, I’ll stay with Beta Seron.  Just my opinion!

10. My first symptoms were not wanting anything to touch my skin, but I didn’t relate this to anything so ignored it. It was probably a year & 1.2 later my right leg was hurting & dragging, thought I had pinched nerve. I went to the chiropractor & in a couple of weeks was fine. In Nov of 1979, I woke up one morning & one side of my face was paralyzed. I went to an ENT, who said it looked like bell’s palsy except I had no feeling & that didn’t go along with it. He referred me to a neuro & the ENT must have had some suspicion. I went to neuro & he immediately said he wanted me to go to the hospital for some test. No one ever told me what they were looking for, so of course I’m thinking the worst & my husband is scared, also. After running several test & doing spinal tap the dr walked into my room & said “you have Multiple Sclerosis”. I didn’t even know what MS was, so I was relieved to have a diagnosis, little did I know what was down the road. So much has changed in diagnosing & treating MS today from 30 years ago. I finally got wise enough that I realized that I had a Risen Savior, Jesus Chirst, & He became my main source of medicine, because all I had for many years was steroids & I couldn’t live on them forever. I am now mostly using power & or wheel chair to get around, but I can still walk some & take care of myself. I feel truly blessed to be in my condition after living with MS for years. Sorry I rambled on, but I wish all of you that have been newly diagnosed or are being tested the very best with all the new meds there is today that you will be able to live a long life without to many complications.

11. May 2013 first episode – optic neuritis, facial paralysis and tingling tongue went to A&E
    Diagnosis within in June after MRI and seeing optician
    Had another bad relapse in July 2013 course of oral steroids
    Started Avonex
    Just in middle of another relapse started Oct back on steroids and starting Gilenya soon.
    I didn’t feel supported at the start but the more aggressive it’s got the more support and guidance I have.
    It’s frightening scary and I’m still learning but I’m determined to not lets this take over my life but I just need to get better first.
    From being out going to spending a lot of time sat in and scared of going out incase I get exhausted and can’t make it back home is my biggest fear.

    • Sarahfm83 
      I have heard good reports about Gilenya, hope you get it soon & it gets you stabilized. You should ask your doctor to prescribe you something for fatigue.

12. Every year around this time, I get really sick with either upper respiratory infection or the commom cold….a long with bronchitis! On the week of Christmas 2012, I found out I had the flu and my face was droopy on the right side. Also on my right side, my eyes and lips were jumping out of control; LITERALLY! This began to scare me and my mom noticed even more of the droopiness on my right side when I took a picture and my smile was sooo crooked! I’m known for my smile so she could tell right off that something wasn’t right! I was thinking that maybe I was having an allergic reaction to my meds prescribed for the flu. After about 2 and half days of droopiness and uncontrollable jumping of my right side, I decided to go the the e.r. They ran multiple tests that carried over thru the night to the next morning. After multiple tests and a final test (spinal tap), my doctor came in the next day with my final diagnosis! Multiple Sclerosis! 🙁 I was 21 at the time of my diagnosis (Dec. 28th 2012) and I was released the day before my 22nd birthday on January 1st 2013! My life HAS NOT been the same since but I am soo grateful and thankful for GOD being the head of my life and HIM keeping me sane and OK throughout my first year battle with MS! Also my family and few close friends who have done nothing but comfort me and be there since December 28th 2012!!! I have a long road ahead of me I know being just 22, but with God, ALL THINGS ARE POSSIBLE! Be blessed (: and FIND THE CURE<3

13. I was diagnosed 20 years ago. I am now 47. I had 2 young children at the time.  I woke up one morning and my vision was doubled.  My family doctor sent me for a cat scan then from there I was sent to a neurologist and for a MRI.  Lesions. MS. It was a scary time.  I just wanted it to be something that could be cured.  I was put on Betaseron.  I didn’t last long.  I didn’t like giving myself a shot or having someone give it to me.  I quit taking any medication for MS.  I know that probably wasn’t a good move but so far so good.  I have been in remission pretty much since my first symptom went away.  I thank God.  I would like to  find a new neurologist and maybe get on the new oral therapy.  I know even though I have been pretty much symptom free for nearly 20 years that could disappear in the blink of an eye.  I live with this always right there in the front of my mind, but I don’t let it stop  me.  I do zumba and I work so hopefully I can keep this up for another 20 plus years without incidence.

14. I have 2 points to make about MS::
    1 – I have noticed that by changing my diet to vegan that my MS has shut up!  Even in RRMS which should be in a remission stage, while I was eating animal antibiotics and growth steroids, I had “flickers”.  Not full flares, but subtle hints of flares.  I mean, the changes weren’t noticeable when I only gave up all pork.  I had to go completely veg’an.
    2 – Like many other people I have applied for SSDI.  Granted I was lucky and was awarded.  However what happened to me with that decision can happen to anyone that applies.  My credit rating was dropped to 000.  I’ve seen on FaceBook that some patients still have credit scores, but I personally was reduced to zero.  Its a good question to ask your attorney!
    Good luck to all!  We just keep fighting the good fight!
    OH and Happy Halloween!!!
    ~Marilyn

15. Last week on October 23, 2013 I was diagnosed with MS. I had an MRI done in May (due to eye pain) on my brain, my PCP said it was nothing, just stress. It faded away, but 3 weeks ago I began seeing a bit blurry in my right eye. I went to urgent care to see what was going on. He then referred me to see a doctor that specializes in ophthalmology. From there I took an eye/field test, then off to get an MRI on the brain.. again. This time around they did find lesions. I was on an IV treatment for three days to get my vision back clearly in my right eye. I am now on a steroid for 5 days and I am doing great! I will be seeing a vision doctor tomorrow to follow up to see how much of my vision I have gained back. I have a spinal tap coming next week, and i just pray and hope that no lesions are found. I am a bit nervous about it.. BUT I am a fighter!

    • msprincess86 
      Optic Nueritis, welcome to the club!  I am missing the right half of my vision from my right eye.  I probably could drive if I had to but not at night and not on highways!  Nope, I stay home all the time.  Steroids keep me awake, where I force myself to sleep a couple of hours a day when I’m on them.  Plus I gain weight from them.  I don’t know if its the steroids themselves or maybe just because I’m awake all the time and bored!  OH and they make me break out like I was in puberty again.  I’m so glad my RRMS has hit that long quiet remission stage!

    • I really hope they caught this at an early stage where i can stay in a healthy remission! I hope the steroids dont to anything crazy to my body.. Although i only have to take them for 4 more days. I’ll feel better once i’m in a routine of normal meds i will be taking daily. 🙂

    • msprincess86 Thankfully those steroids are prescribed for about a week,  But my house is extra clean that week!  Boredom makes you do wacky stuff in the middle of the night!  Feel better!

    • If you don’t mind me asking.. How long have you now been diagnosed with MS and are you able to live a normal healthy life? What medications are you currently on & did it take them a while to find he correct medication that would do you well? Sorry for all the questions! 🙂 i’m new to this obviously! Ha

    • msprincess86
      Hi!
      If I could
      only get a neurologist to sign a letter saying the metal used to reconstruct my
      hip was what gave me MS, I’d be on a Caribbean beach having this
      e-conversation!
      The POS car
      I was driving to work on a Wednesday morning got wrapped around a palm tree.
      (yes, Florida!) I have almost 12 inches of metal bolting my hip together with 5
      pins. That happened in 1990.
      (continued…)

    • msprincess86
      It was about
      3 years later that I was diag’d with MS. I absolutely hated that the ONLY
      medications for MS were all injectable. I started on Avonex, and when that
      failed me about 6 or 7 years later, I was switched to BetaSeron. It has been
      working beautifully! I was ecstatic when my neuron prescribed Tecfidera this
      past summer! 20 years of stabbing myself and finally its now pills!
      I was on Tecfidera
      for three weeks when it started to give me the runs. Ten days and my nuero gave
      me the options of switching to Aubagio or Gilenya. I looked them both up online
      and very much disliked the side effects listed. No thanks! I’ll keep my hair
      and it would be my luck that I’d be home all by myself when my heart rate would
      fall to a dangerously low rhythm. Nah, I went back to BetaSeron until something
      else comes out or they fix the new drugs.
      (continued…)

    • msprincess86
      Hi!
      If I could
      only get a neurologist to sign a letter saying the metal used to reconstruct my
      hip was what gave me MS, I’d be on a Caribbean beach having this
      e-conversation!
      The POS car
      I was driving to work on a Wednesday morning got wrapped around a palm tree.
      (yes, Florida!) I have almost 12 inches of metal bolting my hip together with 5
      pins. That happened in 1990.

    • msprincess86
      I quit
      FaceBook this past week. I found myself on it for 4 and 5 hours a day. Nope,
      this house could use some more attention anyway! I wish there was a way to give
      you my email address in a private message, because I’d rather not post it
      publicly!
      Anyway, take
      care! OH and Happy Halloween!! BOO!
      Always,
      Marilyn

    • MarilynRoberts  msprincess86 Marilyn, you could establish an email just for the MS conversations on gmail or hotmail if you want to stay in the loop.

    • MarilynRoberts  msprincess86 
      steroids can an usually do keep you awake. Is there not some other medication they can give you besides steroids?

    • BethFanninHall MarilynRoberts  msprincess86  
      Beth, Steroids keep me awake, too, and I only resort to them when symptoms are really bad. They shouldn’t be used often anyway because long-term use is not good for you, especially your bones. They should only be used as a smack-down to curb the damaging effects that an attack has on your nervous system — it can prevent further damage that inflammation causes on both the myelin and the nerves the myelin protects. So though it has that rotten side-effect of wakefulness, it’s impact on curbing further inflammatory damage is pretty important. HOWEVER, it needs to be used as that smack-down drug. During quiet periods it’s a really good idea to do what you can to keep systemic inflammation down — through diet and supplementation if you can. I take flax seed oil, Vitamin D, E, and stay away from the foods I know cause me trouble like gluten and dairy. A consult with a Naturopath or a nutritionist who is “in the know” about inflammatory-causing foods can be a real help.

    • MarilynRoberts  msprincess86
      Hi Marilyn, So i remember what you said about the steroid! It made you breakout like crazy.. okay so it did the same to me! Like BAD! Any tricks you have so i can get rid of this ASAP?!

16. In the spring of ’99 at 19, the right side of my body was numb. I went to my family doctor. He said, in short, I had 1 of 2 things. Shingles or MS. This was on a Friday so he said that if I didn’t break out by Monday I would be referred to a neurologist. By monday, I didn’t break out. 2 weeks later I saw a neurologist. After !ONE! MRI, he didn’t think it was MS. Because of car accidents I’ve been in he believed it was a pinched nerve. He ordered another MRI. The tequ scan was 1/3 to low, blessing, and caught something. So MRI number 3 was ordered along with a CT. Contrast was included. 10 leasons on the brain and 1 on the spinal cord. Doctor still thought accidents. In the fall of ’99 I got a new neurologist. Yes, another MRI and CT both with contrast. On January 24, 2000 I was diagnosed with MS. I’ve been a volunteer with the NMSS since ’97 so I’ve known about MS. The doctor thought I’d break apart with the diagnosis but having an answer was a releaf. *chicken pox (x2)-brothers*Rosetta ’90*mono-4months ’95

    • I am dealing with something similar now. After 1 MRI, the neurologist said I didn’t have MS. Offered no further testing of any kind. Even though at my visit I presented with noticable drooping of the right side of my face, slurred speech, loss of balance, and a long list of feelings down my arms and legs that couldn’t explain. Plus a history of Mono. I couldn’t belive it. I’m currently looking for a new neurologist so I can start over next month when my new insurance takes over.

17. In the spring of ’99 at 19, the right side of my body was numb. I went to my family doctor. He said, in short, I had 1 of 2 things. Shingles orMS.

18. I had some symptoms about 6-8 months before my actual diagnosis. My PCP at first told me it was a vitamin D deficiency, put me on vitamin D and the numbness in my left foot went away within about 2 weeks. Then I noticed numbness in both of my legs from the waist down but worked that whole week. Then that Saturday I noticed the numbness creeping up and decided to have it checked out. After 5 MRI’s 2 sets of X-rays, spinal tap and a week stay in the hospital with steroid treatment I was diagnosed with MS. I am still waiting for my appt. with my neurologist (Oct. 31st) to see what treatment he will suggest. I have been back to work for about a week and just find that I tire out more easily than I used to. Since I work in the hospital I have found my co-workers to be extremely supportive and they give me pointers and tips on things to do and not do.

19. Slightly controversial, but my MS shut up when I becam vegan.  No more animal antibiotics nor growth steroids in my system!  In theory this is a free country, but that worked for me!  OH and being vegan part-time is not the answer!

20. I didn’t start out with classic optic neuritis. I lost vision completely in my right eye. This was initially put down to a vascular cause like a retinal stroke or a detached retina. So I was tested for vascular problems first. Then Temporal Arteritis, the treatment for that masks the symptoms of MS so I had to be weaned off before I could be handed over to the Neurologists at the Walton Centre in Liverpool. Once they had me on their case load diagnosis was pretty quick. I went from possible MS to LP and MRI and diagnosis in less than a year. The delays were all due to the testing for strokes etc. My first diagnosis was SPMS. 
    I didn’t really know very much about MS other than that it wasn’t a death sentence. My GP asked me how I would feel and I said I really didn’t know but pretty Pee’d off. It was only later that I had to choose not to be a sufferer. My advice would be find out as much as you can. Ask questions every time you meet an expert or go for a appointment or check up.
    I am lucky as on the Isle of Man we have an excellent support network from the visiting Neurologist from the Walton, through a very, very good MS Nurse at the main hospital and back to our GPs. They are all happy to advise anything from CCSVI to LDN, vit D, fatigue, incontinence, the whole MS package.
    My advice would be find out as much as you can. Ask questions every time you meet an expert or go for a appointment or check up. Learn about it, learn to accommodate it and learn to live with it. Remember not to let the elephant in the room get between you and the light source.

21. Hello everyone, I was diagnosed 3 years ago just after my mum passed away, which in itself was stressful enough,  It has been  well over 20 years the dr’s are now saying that I have suffered from MS, but the GP took no notice of all my symptoms because i have four children 3 with severe mental impairments/autism and also a husband who is wheelchair bound due to a degenerative spinal disease……so they always put all my symptoms down to stress…….even thou I would be bed bound for days on end and have to walk using a frame or crutches and in the end a scooter..  Finally I lost eh use of my legs and went completley numb  from the waist down and was bladder & bowel incontinent, they sent me to A & E as they thought I had a trapped nerve in the spine.  This MRI showed everything was normal….so then I was refered to neurology, but before getting there I had already said to my husband I think I have MS, on the basis that my nan had MS and on reflection I could remember mum telling me how it affeted her and could see my difficulties in what I was being told!  so by the time I actually got the diagnosis there was not angry more relieved that after years of being told all my pain and mobility issues were stress I finally had a answer.   Since then thou I have gone through a bad time feeling worthless and depression…. i do get a bit down having to take so many pills everyday just to enable me to get out of bed!!!  then there is the copaxone injections to remember and the dropping of things, and falling over like your drunk, and people making comments this I find a bit distressing even after 3 years! Does anyone else still struggle with emotions years after diagnosis?  I wish all of you a lovely weekend x x

    • Hi, I too have a disabled child. And for years now I have had all these symtomes that the gp has been putting down to stress but I’m finally seeing neuro now starting tests for ms, iv been tested for so many other things I’m totally fed up of them brushing me off, reading ur post gives me hope thank you xx

22. well in october lasy year i got really ill could not walk properly the dr said i was a drunk, then i went numb in my mouth and face then i got optic nuritis, but ive had problems for years i lost the hearing in my right ear dr said its a virus ill get it back after 3 momnths that was 11 years ago, then my left hand went numb 9 years ago then i got torso numbness was meant to see someone but was to ill and missed the  apoinment then i got a pain in my shoulder that then teamed up with facial numbness then of course the optic nuritis luckly it came same time as i was due to see nuro had mi i see a lot of damage but have two marks on my brain that has caused it all to be right sided so off to nuro he sais ms but then had a contrast done again he said ms had lp it was clear so have to now go to the expert who wrote to nuro saying he looked at scans and they are dealing with typical disease what ever that mean so find out on the 8th i hope oh also been diagnosed with stenosis via my cervicle mri 🙁 sorry its long and rambled but this is a first blog post for me lol good luck to everyone i hope no one feels as confused as me xx

23. If anyone has any questions I will be more then happy to answer.

24. Had my first stem cell treatment last Dec. Amazing results. Getting my second next month. I was skeptical about it at first just like everyone is but I said what do I have to lose? They are mine mixed with my healthy blood so nothing foreign is going into my body, so I jumped in with both feet and I am so glad that I did. I have had MS for 32 years and my stem cells have always been there for me. SO MY ADVICE……..USE THEM!!

    • AlesaPowersArmstrong I am thrilled to pieces that GWB is long gone from the White House!!  That A-hole made stem cell research and use into a religious battle that he wouldn’t budge on.  Thank you President Obama!

    • Do you have a blog? I’m guessing this is in the USA are you on a trial basis ? I’m newly diagnoised but it’s quite aggressive Relapsing and remitting and im keen on combating it.

25. 1 month from the time I fell down some steps followed by a 3 day hospital stay ,,,
    MRIs (full spinal and brain plus previous even 10+ years ago of double vision) NO spinal (Will NOT let someone toy with my spine,,,neuro said MRI with contrast is good enough with today’s technology.  I wouldn’t allow it no matter… )
    Now on Copaxone and legs and brain disconnect in high heat and humidity.   
    Concerns (Would I end up in a wheel chair)  Luckily not…
    Advice ( Learn to mange it.  Don’t push past your limits too far but also don’t become a couch potato….  Stay active but also stay mobile.  Its not like an athlete where no pain no gain.  When pain, back down, cool down and then if you wish, go at it again…. One step at a time.  Core temps are the enemy…)

    • stemmlers I also had a very bad experience with a spinal tap.  Apparently I stood up too quickly and I had a severe migraine for 3 days.  I refuse any more of those.  Yet an MRI is just them taking pictures with a very loud camera.  Contrast is just a kind of dye they use to see more detail than they get from standard MRI.  Yeah they lay you on a board and slide you into what looks like a something you’d swear was a pizza oven!  They take the first set of pictures, pull you out, inject contrast, then push you back in for the same set of pictures again.  Nothing horrible.

    • MarilynRoberts stemmlers  aHhH Yes i have had the MRI with contract done before it’s not the MRI i am worried about it’s more the the spinal tap that is making me SO SO FRIGHTENED! I have heard bad stories, but i am hoping that everything will go smooth and that the pain wont last for too long!

    • msprincess86 MarilynRoberts stemmlers Personally I told my neuro many years ago that I REFUSE to have any more spinal taps.  Look at all you want to on my MRI.  However I learned with spinal taps that if you sit up in the first 15 minutes afterward, that will give you a severe migraine for DAYS afterwards!  But good luck to you!

    • MarilynRoberts Thanks i need all the luck i can get!

26. I had optic neuritis at 33. Went for eye exams, they said i should contact a neuro. I had public aid, so I found one, downtown. She was excellent, and still is. She saw me, knew what it was, immediately. She admitted me into the hospital for five days for IV steroid treatment. She ordered an MRI, they found two lesions, one on my optic nerve, and one on another spot of my brain. She also ordered a lumbar puncture. That was absolutely excruciating, probably the worst experience of my life, but I survived it. That determined I had MS, as one clinical episode. From onset of symptoms to actual diagnosis, I think it took two to three weeks, once I went through all the eye exams, first. The MRI is pretty easy, as long as you can lie still for hours. The lumbar puncture was quite difficult for me, but I am also a heavy girl. If you are diagnosed with MS, it is not the end of the world. Just take it all one day at a time.

27. Had optical neuritis- mri-and diagnosis within 3 months. 39 years old. My advise..get life insurance if you think you may have ms. They cant drop you once diagnosed. But they can deny you coverage when applying if you have a diagnosis! Wish I knew….

    • taemic Apparently you need a different insurance company.  But MS is not fatal!  Its just annoying but won’t kill you!  I think the only lethal kind of MS may be PPMS (Primary Progressive MS).  Apparently that insurance co that denied you is unaware, and therefore not an acceptable company!

28. I was 10.

29. Florida is no land for MS.

    • Agree, which is one of the reasons we are moving back up North. Because of my heat intolerance I cannot enjoy being outdoors. Pretty much confined indoors with the central air. As long as I am cool I am able to function somewhat but nothing like what I used to be able to do.

30. Thirteen years of Ms changes perspective. I had too many Spinal Tabs because the hospital did not sent records from Miami, Florida.People have to educate themselves. Yes, DO NOT let doctors dictate your
    treatment. Cleaned up the diet. MS is a death sentence if you do not get involve.

    • EileenCurras Not a death sentance!  Primary Progressive MS is the closest thing to lethal and that can be controlled with the proper medications and neurologists!  Here in Boston is Brigham and Womens MS Center.  One of the top 5 in this country.  Its where I go!

31. Getting a diagnosis of multiple sclerosis was nothing special. MS in the United States does not mean nothing. The lack of resources and information it only translate to abuse to MS Patients and their families. The lack of understanding of the ADA Law is horrible. In Florida Patients as me were discriminated. The government continues to patronize that idea. People have to mature. No one will do nothing for a Patient. MS is a new Kid on the block in Florida.

    • EileenCurras Best advise I can think of – search the ‘net for the best hospitals in the country for MS.  Brigham and Womens Hospital here in Massachusetts is among the top 5.  They have an MS section where I am a patient.  Great place!!

32. I’m lucky. It only took eight months of going from doctor to doctor to doctor. Finally, someone listened and I had an MRI then a lumbar puncture. During diagnostic phase I didn’t think anyone was listening. Each doctor had his own pet theory. One wanted to do a colonoscopy (because of MS hug), another wanted to do laparoscopy! MRIs don’t bother me but I think they would be hard for someone who is claustrophobic. The MS puncture wasn’t too bad.  I was scared but wanted to know WHAT was wrong with me. I thought getting the diagnosis would put me on the road to recovery. Hah. Didn’t know. I would say to anyone who is waiting…do your own research. DO NOT let doctors dictate your treatment. Consider alternatives. I tried Rebif for eight mos. It took a rock and turned it into a boulder. I stopped and never looked back. Removed metal fillings. Treated for heavy metals. Cleaned up my diet. I take low dose naltrexone. It has all helped. In the beginning I thought I would have to quit working and go o disability. Now, seven years later, I’m still working full-time. Not in a wheel chair. Not in too much pain. Don’t take MS as a death sentence. It isn’t.

33. I am 48 years old, recently diagnosed, Feb 2013, Symptoms began at age 30, slurred speech, 2006 B12 deficiency and MS hug, I had no idea what it was.  Hugs continued probably weekly, 2011 vomited daily for 6 months, surgery dis not cure but vomiting 4-5 time monthly.  Lumbar puncture came back negative for the Genetic factor.  I really believe the marker for early detection does not exist yet.  Then Dec 2011, other symptoms, numb Right foot and right hand, Stiff back, Stiff legs, Slow reflexes and slow movement.  It was my Rheumotologist that never stopped searching, testing and finally referred me to Neurologist.  The first Neurologist was an idiot.  He kept telling me, “I’ll ask the questions” when of course I had questions.  My Rheumotologist then referred me to my new Neuro.  He and his staff are wonderful, Thank you God.  The first thing he told me was not to stress because this will only increase MS symptoms.  He makes me laugh, he is so understanding, and literally showed me my DVD of the leisions in my brain on his own computer.  As I looked at the image, in shock, this is my Brain, he was so patient and understanding.  I am only on Prednisone during flare-ups at this time.  Live every day, literally every moment, and really live.  Symptoms are daily, unable to walk in the morning, Headaches on left side of head,  spasms during the night with interrupted sleep.  Symptoms vary in intensity and frequency but are daily.  I am learning to accept my diagnosis.  And taking my Dr’s advice:  Don’t Stress!

34. I am 37 years and it took 7 years.  I suffered from migraines, headaches since high school but at the age of 30, my body went numb and I was told to take my butt to the emergency room immediately.  I thought I was having a heart attack.  I was sent to a neurologist after the emergency room visit.  I was given MRI after MRI.  Yes, they found gray matter and yes, there was a possibility of it being MS but I was convinced it had to be something else and since that was my first only symptom, I did not want to get an injection in my spine.  For 7 years, I did not get another symptom.  In March of this year, I caught the flu from my nephews.  I was so sick.  I couldn’t see out of my left eye.  My head felt “foggy”.  The excruciating headaches were unbearable.  I had to push myself to run on the treadmill because my right leg just didn’t want to run.  I finally caved in and got a puncture and officially diagnosed me with MS.  I now take Rebif injections 3 times a week.  My body is still reacting to the side effects of the medication and it has not been easy.  I’ve been trying to stay as active as possible by going to the gym and working.  I try to stay away from stressful situations and I try to rest/sleep a lot.  I have a new outlook in life – I should say a different look of life.  Live it to the fullest.  You have only one life and if it’s going to be lived with MS, there’s absolutely no reason why something should not be done.

35. I am 56 and was diagnosed 5 years ago.I woke up one morning and my right side was numb.  It took a year, several MRI’s’s and 2 lumbar punctures and a trip to the Mayo Clinic. When my neurologist himself called and left me a message at work to call him and  I got really scared. When I called him back he confirmed I had MS. I told him he scared me because I thought it was something worse. I decided that there was no use being upset about it, can’t do much about it. My husband told me to make a bucket list of places I wanted to see before I have a wheelchair. I have been to Australia, Hawaii, Aruba, New England and going back to Aruba this year,

36. Diagnosed at 44 years old.  I’ve had tingling in my fingers and toes for about a year and a half, finally got diagnosed when both feet, hands stomach, back and under my arms started feeling numb, then cramping (MS hug) in my stomach.  Diagnosed back in March 2013.   Got to admit, I was really nervous when they told me what they thought it was but after 3 MRI’s and a spinal tap confirmed MS, I had come to accept it.  Not going to waste my life by worrying about it and being upset and depressed.  I am going to live life to the fullest that way I don’t wake up 10-15 years from now upset that I wasted my life being upset about it.  Don’t get me wrong, I would love if there was a cure but my faith in GOD gets me through.  Still learning things about MS and am now on Avonex to control it.

37. From first sign to diagnosis was actually 19 years but thats cuz it went away and didn’t bother me I had no clue that eventually I would be all messed up. From my first sign that there was something wrong with me to diagnosis 5 months. I started walking funny so I went to the Dr. my GP told me I needed to get out and be more active but she sent me to a Neuro cuz my back was hurting. He MRI’d my back told me he could see nothing wrong and sent me to PT . That tore me up so I quit going. I went to a chiropractor who told me it was a build up of aspartame in my system and to quit drinking diet soda. Well I did that and got so bad I couldn’t walk up the stairs to go to the rest room. My mom finally made me go to the ER and after sitting there a couple of hours they admitted me. The next day I had a diagnosis of MS.

38. I was about 39 years old.

39. I went to my Gen. Doc with one of my fingers being numb. Having lost my daughter about a year before, he thought it was all in my head. Then  I went to my wife’s  Neurologist who put me through many test including a spinal tap. Then said have M.S. I was opening branches of a bank breaking into a new state. Training managers and running my own branch.. Abut 5 years later Bank was sold , new supervisor who stressed me out big time, then the M.S. really kicked in.

40. I was very young when I was diagnosed MS. 16 I think. 
    One day I just woke up utterly sick. I couldn’t move, I was dizzy. My parents called an ambulance. They even needed to carry me out to the car. After that it was matter of days in hospital, when my doctor said she had suspension that I have MS, so I was singed to have an MR in few months. After MR it was clear, and all the symptoms fell in to places – MS.
    I’m very lucky that my doctor was so competent. And everything was done so fast, that now years after diagnosing MS, I can almost live like a normal young person. With slight bumps in the road.
    But still it is hard knowing that everything you think you know in your life can change in matter of minutes.

41. I was tested a few times with no MS but my GP insisted and eventually got the diagnoses he wanted, to bad for me he does not believe in Lyme Disease so now I am unable to get treatment for what I do have, Lyme instead I am labeled with MS and I never had it to begin with. If GP were schooled in Lyme Disease many of us would never have had any Neurological symptoms because our Lyme may have been caught before it damaged our brains.

42. I was diagnosed in 1992 at Mayo Clinic in Rochester, MN.  It took over 2yrs to be diagnosed and it was a nightmare!  I was in a car accident and shortly after began to have entire left sided weakness.  It started first with my face then down my entire left side.  I ended up in a wheelchair.  I would get better. Then I would get worse.  One time I could not even sit up at all the entire room was spinning.  The drs had to give me meclizine for days.  The diagnosis from the doctors here in my home town?  I had conversion disorder!!  LOL  It was in my head.  I hated my job!  Yes, that was in my records.  The thing is, I didn’t have a job!  I was a stay at home mom!  I was on so much medication, I was depressed and crying.  I told my primary dr either you refer me to Mayo Clinic or I will find a way to go myself.  he referred me.  I was there one whole day of testing and they sat me down and told me I have MS!  I was relieved!  I now had a way to fight instead of laying being told I was crazy!  I never felt so released in all my life!  It was a new day for me!

43. Ig took 3 days when I went looking

    • I was only 21 with a 2 yr old and 4 yr old

44. It is the most incredible coincidence.  I was born here in Billings, Montana and two months before I turned thirty, I moved to Spokane, Washington.  I have randomly heard from two sources that Spokane has the highest amount of ms diagnosis in the United States.  It is far from viral, it is just a coincidence.  My lesions began just as I left Spokane.

45. I was a nuclear engineer on active duty in the Navy when I started having some major symptoms.  I was in the engineering spaces of the ship, supervising the operation of the power plant, when I doubled over in pain.  I was carried out on a stretcher, they thought I was having a heart attack.  This was the beginning of a 4 year nightmare of being diagnosed and treated for everything but ms.  I saw every specialist the military had while my career and possibility of advancement were put on hold.  I was finally diagnosed with Chronic Progressive ms in 1985 a fterfteftf afterwardafterwardafterafteaftaf

46. I was one of the lucky ones, diagnosed right away.  I was hospitalized after being checked for stroke, brain cancer or a tumor.  I just turned 27 years old and had pretty much lost use of the left side of my body.  MRI results and a lumbar puncture revealed MS and I was referred to the MS Clinic at Brigham & Women’s.  I am now 10 years into living with MS and I couldn’t be healthier.  I have had two healthy sons, 7 years old and 16 months old.  I run 5Ks and 5-milers and hope to run a half marathon soon.  MS has given me perspective on life.  “Life is a banquet and most poor suckers are starving to death!”

47. after 2 years of unverified test and 1 spot on brain, a biopsy and damage to lining of brain, they found 2 more spots on my husbands brain and took another lumbar that finally verified ms, has been a hard road so far.

48. IT TOOK 2 YEARS FOR MY HUSBAND TO BE DIAGNOSED, FOUND 1 SPOT BUT NO OTHER , FINALLY AFTER 2 YEARS OF SUFFERING, THEY FOUND 2 MORE , LUMBAR OUNCTURE, AFTER 4 FAILED ONES AND GOT HIS TREATMENT STARTED.HAS BEEMN A LONG ROAD SO FAR.

49. My story started with a seizure in 2010 which was a first for me. After several MRI’s, 2 lumbar puncture, and test plus several Doctors, I was finally diagnosed in May 2012. I felt like a human test subject when the Doctors couldn’t make up their minds. I did get to the right Doctor who is a Neuro/MS specialist. It does take time to go,thru the process, which I didn’t know. MS testing is not like a blood test where the Doctors can make a quick 1 day decision normally. I would suggest joining chat groups, and doing research.

50. It took me 4 months to get a diagnosis from the time I told my family doctor, saw a neuro and had an MRI. I had a horrible family doctor and neurologist at the time I was waiting for/getting a diagnosis I’ve since got a new neurologist and family doctor that are both much more supportive, knowledgeable and caring. My concerns prior to my diagnosis and still until today is how is this disease going to affect me? The advice I’d give someone in the process of being diagnosed is to do your research (online, etc) and ask your doctor(s) lots of questions and don’t be scared to change doctors if you don’t like the one you have!

51. I woke up one morning this past March feeling dizzy, as though I was
    walking around in a fog. I had trouble walking (mainly my right leg was
    pretty stiff) and right my hand was weak, it was hard to write or type
    and I noticed a change in my speech. I initially thought I was having or
    had a stroke. Went to my primary doctor and he did blood work and
    originally thought I had a thyroid issue and probably anxiety.  Went for
    an ultra sound of my thyroid and all came back clear. A week later,
    blood work came back clear. So he ordered and MRI. Went in for an MRI,
    next day was in his office with him telling me I had 6 lesions on my
    brain and had ms. He immediately sent me to a neurologist at the
    Cleveland Clinic and on May 1, 2013, she went over my MRI scans in
    detail with me and explained everything, did a physical exam, asked me
    questions about symptoms etc. and confirmed the original diagnosis of
    ms. So for me the process from the onset of symptoms to the diagnosis
    was approximately 5 weeks. I had an MRI with an injection, (contrast I
    think they called it) I had no side effects at all. My primary physician
    was very caring in explaining my diagnosis to me. I was of course in
    shock and extremely upset. He sat with me, and answered all of my
    questions and was very positive and reassuring. I left his office with
    the biggest shock of my life, but with the mind set that I was going to
    do whatever I had to do from here on out to learn to cope with this
    disease and live my life. The neurologist at the Cleveland Clinic was
    also very caring and knowledgeable. She explained what ms was,
    what it means and what comes along with it. She discussed all the
    treatment (medication) options available to me and we came up with the
    best option for me. I left feeling satisfied and a little more “at ease”
    knowing that I would be starting treatment to hopefully prevent any
    further relapses or flare ups. I start my medication tomorrow. I never
    had any concerns about ms, as I was pretty much in the dark about the
    disease. When my symptoms first started I feared stroke, or brain tumor.
    Ms wasn’t even on my mind, so I had no concerns relating to ms prior to
    my diagnosis. The advice I would give a person going through the
    diagnosis process or someone newly diagnosed with ms would be to stay
    positive, first and foremost. Being diagnosed with ms is
    not something anyone wants or wishes for. However, once diagnosed and
    confirmed that ms is what you have, try and find the best way possible
    to deal with the news. Ask questions, talk to other people who have it
    (I have and it’s helped a lot). Have a good relationship with your
    doctors. And most of all try not to stress. Remember you will have your
    bad days…believe me, and it’s okay to cry, yell or be angry. Make sure
    you take care of yourself, exercise and eat healthy. And just take one
    day at a time. The tiredness gets me down sometimes, rest when you can. My motto in reference to ms: It’s not what I wanted, but
    it’s what I got…so I will deal with it the best I can. I have no other choice.

52. Had different things just kept going wrong. Dr refered me to the hospital, a friend moved house an her neighbour had ms an told her all the systoms were wat she had. I suggested it when I first seen the doc at the hospital but he said it might be something else..became ill in the feb2003 , went 4 a brain scan in the June an I had another test but can’t remember the name. Then I kept ringing to find out way was up with me. Then in the August the doc rang me just to confirm it was ms I will always remember the day as it was my birthday.. I’d already rang the ms trust to get some infor though the post to try an prepare me. When I went back to the hospital the doc told me he could not cure me just help me.

53. I HAD 2 relapses in 8 months and the second one was optic neuritis so was very easy to get diagnosed. My optic neuritis was v serious i went completely blind in my left eye. I had 2 MRI scans one after the 1st relapse and another after the 2nd and showed 9 lesions on the brain so kinda obvious. I had no lumbar puncture as my neuro said he thinks MRI are a better way of diagnosing. Yes healthcare professionals were amazing. Am so lucky to have a great neurologist who specialises in MS. I was more scared that my eyesight wud never recover! I was diagnosed a year ago and still not come to terms with things reallly…everyday is a battle and suffering with fatigue everyday makes that battle harder! To anyone still getting diagnosed don’t be scared, there are people there to help u. I am a 27 year old girl and refuse to let this beat me!

54. In June of 2008, I moved to Germany to live with my brother and his wife(I am from Montana).  I flew through Chicago on my way to Frankfurt and checked out the then Sears Tower and lost my balance looking up at it.  A few weeks later, we visited Amsterdam and I recall walking slower and running out of breath.  We later went to Switzerland and I was also having difficulty breathing, I assumed it was the altitude.  A little after that I decided to return to America, but not before dragging my butt through Prague.  I made it through New York City and Washington D.C..  I eventually made it back to Montana and insisted that my father pick me up in Glacier National Park.  I got a job as a delivery driver, the economy fell apart when I was in Germany, and continued to stumble over my feet for another two years.  In June 2010, a car pulled in front of me on a fifty five miles an hour road and nearly ended my life(I believe in seat belts).  When I was in the hospital for what I call the mother of all exacerbations, a doctor saw how I was walking and scheduled an mri.  Ms was quite obvious, my lesions were quite bad I guess.  I have had ataxia since then, but at least I am not progressing at all.  I do get quite a story about my diagnosis and it did just happen a few years ago.  I will always have that.

55. Something was really wrong! My doctor sent me to every kind of specialist and every test was done. Nothing! I thought I was crazy and I’m sure my doctor thought so too. (5 years later) I was sent to a neurologist and she did MRI’s after MRI’s, (for 1 year), then on a beautiful FALL day in the afternoon with the wind blowing the leaves and a slight shiver in the air, I entered her office for my appointment. An hour later she tells me bluntly, ‘you have multiple sclerosis’. I was numb everything around me seemed faraway, I’m not sure I heard her right but I did not ask again. So I left, outside everything was the same, except I was different from that day forward. Relieved that I was not crazy but confused! How could something like this happen to me? I drove home not even thinking about the act of driving! At home, I looked in the mirror, reached down and picked up my hair clippers and cut all my hair off!! Don’t ask me why at the time it seemed like the right thing to do, my daughter came in from school at the same time my husband came home from work, “WHAT HAPPENED TO YOU”? Slowly I came out of the funk and explained to them calmly, ‘I have MS’.  This story does not end here!!  I’m sorry to say the REBIFF made me deathly ill, I tried, (for 7mos.) to make it work now I’m off all meds. (1 year later) Cognitive problems and horrific pain in my left leg and arm and back, on my own I decided to go to the Mayo Clinic. There that put me through a multitude of test, including an MRI and a Spinal Tap. The Mayo Clinic doctor told me all test indicated I DID NOT HAVE MS but that something was wrong and I’d have to wait till “the ugly monster showed it’s head’. I came home and suffered in silence, confused more than ever and lost my trust in doctors! I refused to go to ANY doctors! (8 years later) My left leg, arm and left side of my face became paralyzed. I thought I was having a stroke. Three days later in the hospital I was told ‘you have MS’. No big surprise this time. (8 mos. later) I’m now on Copaxone, things are not great but it could be worse. So I guess you might say it took 14 years to be diagnosed with MS, I still do not totally trust doctors. Of course there is much more to this story than what I’ve written, but I’m sure it’s becoming boring to the reader. Thanks for letting me write this! Don’t give up, you are not crazy!!

56. While it was frightening, it was actually a relief to FINALLY have a name to put to all the symptoms I had been experiencing for so long. Because my symptoms weren’t as severe as many others experience, for 13 years I was treated like a mental case, a hysterical pre-menopausal woman, then a hysterical post-menopausal woman. I FINALLY found a doctor who actually listened to me, who referred me to the Mayo Clinic. Voila! Diagnosis!  It was a relief to know that I wasn’t just a whiney hypochondriac afterall!

57. When the”prationer” came into my room with my diagnosis….heartlessly. I had thoughts of my young son and wheelchairs:'( :'( :'( but thirteen years later no wheelchair and comments from people that wow you would never know you had MS. It is not the end of your life.