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Julie  Stachowiak, Ph.D.

How long do you think you had MS?

By May 31, 2013

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When I was diagnosed with multiple sclerosis (MS), the neurologist looked at the MRI images and said, "Based on what I see here, I think you have had MS for at least 15 years, maybe 20."

When I think back over those years, I think of all the doctors I saw in different specialties (including, but not limited to: neurologists, opthamologists, infectious disease specialists, psychiatrists, internists, orthapedic doctors, and rheumatologists). I think about the funky symptoms that came and then disappeared over those years.

Based on this, I guess my doc's estimate was about right. Maybe even the 20-year guess.

What about you? How long do you think you had symptoms before you were finally diagnosed? Leave your story in the comments section below.

Comments
May 31, 2013 at 12:48 pm
(1) Carolyn says:

About 30 years. Never could figure out what was wrong always came and went.

May 31, 2013 at 1:29 pm
(2) Tony says:

My diagnosis came after about 8 or 10 years of symptoms and 4 years of investigation.

June 1, 2013 at 6:21 pm
(3) Janet says:

I was diagnosed at 46. My neurologist now thinks I probably had it from my late teens when I began falling for no apparent reason.

June 3, 2013 at 12:51 pm
(4) Colleen says:

I was diagnosed at 26, now 47 it’s been a long road, I’m still slightly mobile. I remember in about grade four waking up some mornings telling my parents I could barely walk. I slept all day, then went to school tired the next day. I think it was MS :}

June 5, 2013 at 11:33 am
(5) Mario says:

I was diagnosed in1999,but remember having unexplainable at the time numbness from 1994 when I was 27yo.

June 5, 2013 at 11:36 am
(6) Sanjiv says:

I was diagnosed within a week of visible symptoms. I was 52. Doctors say I may have had it for over a decade before it got caught.

June 5, 2013 at 11:37 am
(7) Carol says:

Was just diagnosed a yr ago at age 56. Looking back, I ignored symptoms for at least 18 yrs. Numbness in my feet I figured was neuropathy, pain around my chest I attributed to a freaky sensitivity to my bra strap.

Am glad I didn’t know sooner as my hubby went thru 2 liver transplants and chemo in between for liver tumors. All is good now. My turn for him to help me. Feeling extremely lucky that my symptoms aren’t horrible and am really doing well on treatment. Only reason I might wish that I’d known sooner would be to have started treatment earlier.

Your writing is so infomative and I love reading your articles! Keep up the great work and be well…

June 5, 2013 at 11:42 am
(8) J'Marinde Shephard says:

I am 65. I was diagnosed 38 years ago, in 1975, after MANY (too many) years of my symptoms being dismissed as MH issues. When I told my childhood docs, they were very apologetic and revealed that I had been displaying symptoms for some 15 or so years prior (as an adolescent and teenager) that they had ignored or dismissed. It might have been SO much less painful and so much more helpful to have known what was happening to me and not be treated like and made to think I was mentally unstable. As I understand it, this was (too) common back then. However, I also have to think that we learn things as we can handle them, and maybe this all shaped me to the insights of and person I am today, not that much of this was not extremely painful to me then and still today..

June 5, 2013 at 11:44 am
(9) Laurie Noland says:

January 2003 I was given the radioactive drink as a treatment for thyroid cancer. February 2004 my first symptoms started. I was told by one neurologist that the radioactive drink likely triggered my MS. I could not find any further information and no one has repeated that since. Confirmed diagnosis May 2005. Thank you.

June 5, 2013 at 11:44 am
(10) Kristie says:

I was officially dx at 21yo. With optic neuritis. Never came to terms with the fact that I had MS until I had my first child In 2000. Then the symptoms exacerbated. Went on to have another child 4 years later again dealing with exacerbation. My kids keep me moving and going every day..like it or not :)

June 5, 2013 at 11:47 am
(11) Rhonda says:

2 years ago, I hurt my neck really bad, my chiropractor sent me to a neurologist, they found out I had 49 lesions on my brain, not knowing if it was tumor’s or ms, the final was my spinal tap. Better to have ms then the tumor’s. They figure I have had ms over 32 years.

June 5, 2013 at 11:49 am
(12) Isha says:

I was diagnosed MS in SEPTEMBER 2009,but the first symptom (Vomiting) occurred in MAY 2009.
Unfortunately, in 2013 NMO Antibody test came +VE.
Now my Neuro Doc is saying I have NMO instead of MS.

Julie, can you please create a new thread/discussion on NMO Vs MS.
We should talk about NMO as well, because Thousands of Neuromyelitis Optica (NMO) patients are potentially being misdiagnosed with Multiple Sclerosis (MS)

Best Regards,
Isha

June 5, 2013 at 11:56 am
(13) Robert Prior says:

I have had ms since I was fourteen years old as it first affected my vision and balance. I am now 44 years old and have to inject Avonex betaferon once a week. In addition to this I have to take a lot of tablets each day as well . The ms has affected how Far I can walk and reduced my balance. In addition to these things the ms has cost ke my job as I was laid off nearly five years ago now. So far ms has cost me everything and im still trying to find employment but I worked for a consultinhg engineer which meant that I had to visit construction sites which are dangerous places especially when you fall over very often .I am still trying to find employment but have not had much luck in London UK.

June 5, 2013 at 11:57 am
(14) GamingMama says:

In 1980 I was diagnosed with GBS- I lost all strength in both my arms. A couple years later I started having periods of fatigue and my arms felt like they had weights hanging from them. That came and went a couple times during that year.

I was diagnosed in December of 2010 with MS. None of the doctors I’ve seen will say how long they think I’ve had it and I was hoping that they might be able to do that. But I think that I was either misdiagnosed when I was 12 or I started having MS symptoms when I was 14.

One doctor did say that the first symptom I had- losing the strength in both my arms- was atypical of both GBS and MS. It was too symmetrical for MS and because I never had any trouble with my legs it wasn’t typical of GBS.

I’m thankful that my MS is mild- now it is mostly fatigue, trembling, cognitive issues, some vertigo and a few other sensory issues- but it would be nice to have someone confirm what I think is true- that I’ve had this for 30 years or so. And it is just like everyone says, when I look back over the years and think of little things that have happened- I think “oh maybe that was MS”.

June 5, 2013 at 11:58 am
(15) Kim says:

I was officially diagnosed at 49, but I think I had it for about 10 years before that. I’m extremely fortunate in that my case is VERY mild, but I had some niggling symptoms for several years–primarily L’Hermitte’s Sign and a slight MS Hug when I exercised. Since I’ve been on Copaxone, my L’Hermitte’s Sign has all but disappeared. My MRI’s have been very good with no new lesions or enhancement.

June 5, 2013 at 11:58 am
(16) Maureen says:

My daughter was fortunate that she was diagnosed at 26 after a dramatic event that led to two extremely horrific misdiagnoses (large brain tumor that led to brain surgery; primary T-cell lymphoma of the brain). Obviously, the misdiagnoses put MS in perspective!

While she wasn’t diagnosed immediately after that very dramatic onset, she was still diagnosed within a few years, and thus started treatment that will hopefully slow down the progress of the disease. Had she NOT had the unusual onset, she may not have been diagnosed for years, as she really hasn’t had any significant symptoms.

She has changed neurologists/MS “specialists” a couple of times prior to and following formal diagnosis, and has undergone several tests to ensure that she truly has MS and not an MS ‘mimicker.” Again, this probably would not have happened without the unusual onset.

June 5, 2013 at 12:01 pm
(17) Laurel B. says:

After being diagnose with numerous problems, was finally diagnosed with MS in 1994. Based on my history, they race it back to when I was 13. Nice thing? The Neuro cancelled out all those other things. Believed they were all flares of the MS.

June 5, 2013 at 12:01 pm
(18) Tracy says:

Diagnosed 12/11 but in my mind I believe since 2002/2003 when my walking became slower and when I was tired developed footdrop – denial kept me out of Dr office and then sx went away at times to better fuel my denial.

If I can give any advice – when sx present themselves seek a doctor!!!!! I may be more mobile and had been able to prevent further damage had I seen Dr in 2002!

June 5, 2013 at 12:07 pm
(19) Maria says:

Well my first known relapse (optic neuritis) was in 1977 but I was only diagnosed in 1986 after my third birth., I guess I ´ve been very lucky because after so many years, I still walk without any help, the most disturbing item is fadigue.
I have had lots of problems with my bowels, but now that I found a new medication that I can control quite easily, Im very happy with that. It was awful before.

June 5, 2013 at 12:08 pm
(20) Leslie says:

I was diagnosed August 1998, but looking back at different things that occurred, I would say since Junior High or 9th grade. I was diagnosed with arthritis, which I now know is the MS Hug.

June 5, 2013 at 12:10 pm
(21) Patricia says:

I figured I had MS since I was 13 or 14 years old. This would have been 40 years ago.

At 13 years old, I had numbness from my waist to my toes. The same year, my face was numb on one side. The numbness went away for both within a week. At 14 years old, I had double vision and was admitted to the hospital. Doctors finally said “I had something like MS but wasn’t MS but it affected my eyes.” I never given a diagnosis on subsequent testing a few years later.

June 5, 2013 at 12:16 pm
(22) Susan says:

I was diagnosed in 1988 at 31 years old. But, I know that there were sympthoms 10 years before that.

June 5, 2013 at 12:25 pm
(23) Sunil Passi says:

I think I’ve had it for since I was 30 odd as I had many of the ‘vision’ issues which the doctors never picked up as MS. I was diagnosed 4 years ago.

June 5, 2013 at 12:29 pm
(24) roger wisdom says:

Igot ms at 34.I was working doing anything I wanted that stopped one thing at a time till I’M 43 now in a wheelchair it took me awhile to acept that but it ok now thats life and I turned myself to GOD and he changed my life for the better who knows if I had’nt got ms that might have not happened.When I first got ms my doctor told me it means (must succeed)

June 5, 2013 at 12:40 pm
(25) Dorethea Harrison says:

Before my official diagnosis in 2007 I had symptoms of MS for over 15+ years. I served in the United States Military and that’s where my troublesome symptoms began. It was a long hard journey for me because the doctors claimed that they couldn’t find anything, however, they never thought of multiple sclerosis and neither did I. I assumed that the doctors I had saw both military and civilian would have known what test should have been given or questions to ask me. How wrong was I? Very wrong! What I’ve learned over the years, is that I must be my own advocate and learn my body and know what questions to ask for myself. I even had to tell a doctor once that I’m not a text book. None of my symptoms presented exactly as stated in the medical text book! Everyone presents with different symptoms some known and others unknown to the text book. So, to some it up, I’ve had MS for 25 now. And if I had symptoms as a young child, then over 30 years!!!!

June 5, 2013 at 12:41 pm
(26) Jane says:

Never had any symptoms (including postpartum after childbirth) until mandatory vaccination in my mid 30s. In 3-4 weeks after vaccination got sensory symptoms which progressed further to weakness & parasthesia. I keep progressing ever since with multiple lesions in brain & spine. I realize that my medical history is not politically correct since vaccines are “safe”, so i’m not going to be surprised if my comment is not published.

June 5, 2013 at 1:02 pm
(27) oSandi says:

I was dx in 1989 at the age of 30 during an optic neuritis episode . Starting as a teenager, I can remember having my right leg fall asleep once in awhile for no apparent reason but I never saw a doctor about it. During my 2nd pregnancy (age 32) my entire right leg went numb from above the hip to the toes.

June 5, 2013 at 1:05 pm
(28) Debbie says:

I was diagnosed 10 years ago at Mayo. The doc said I had it at least ten years before that. I have had symptoms since the ’70′s.

June 5, 2013 at 1:11 pm
(29) Liesa says:

I first had a symptom at 16 ,could not move my legs ,but was told that I’m allergic to the penicillin that I was using at time ,then at age 42 had a final diagnosis of having MS

June 5, 2013 at 1:17 pm
(30) Shirley Dowd says:

My mother who was diagnosed with Primary Progressive MS late 2009 but for 2 years before that we were looking for a diagnoses, before that she was told she had Motor Neurons. After numerous visits to neurologists they have told her it most likely started in her 30′s, she is now 61.

June 5, 2013 at 1:25 pm
(31) jensequitur says:

I think I’ve had MS for a long time. Possibly since age 12. I seem to have times in my life when I’ve been smarter, and times when I’ve been dumber.

It wasn’t until I started having episodes of cog fog that I was able to look back at my childhood and see some of the same problems. Most of my symptoms are mental – word finding/dysphasia, left brain/right brain issues, facial recognition. And weird too! If I had actually been evaluated by a doctor, they would have written me off as crazy.

I started having physical symptoms in 2006, and was diagnosed in 2007 at age 36.

June 5, 2013 at 1:32 pm
(32) Christine Partelow says:

I am 56. I was diagnosed at 26. Had symptoms starting in teen years. At the time, my son was 5. All I wanted was a chance to see him grow up. I did not know much about MS and thought I would end up in a wheelchair immediately. That did not happen and I have grown to accept it over the years.

June 5, 2013 at 1:34 pm
(33) Russ says:

Dx by really sharp Air Force doctor at Travis AFB in January 1970. All started one morning with double vision in a bunker west of SFO. All downhill from there. I took a bullet for my country and Obama takes away my benefits. 43 years kids still fighting that war!

June 5, 2013 at 1:40 pm
(34) Elaine says:

i believe i had MS back when i was 22 years old. i had symptoms of numbness/ and also my big tod on my left foot would feel like when you hit it into the coffee table while walking. i was diagnosed when i was in my 40′s. i am almost 60 now.

June 5, 2013 at 1:55 pm
(35) DWesty says:

Hey I have had this friggin mess of a disease for 28 years. Take Vitamin D 60,000iu a week.

June 5, 2013 at 1:56 pm
(36) charlie says:

i believe my first ms attact was when i was 18 in collage,one morning woke up to a real bad headacke and could not move,i was sick for two weeks,dr’s said i had menigitius.i went on with my life,joined the service spent 23 years ,after retiring one morning at the computer my left side went numb,could barley speak,thought i was having a stroke,but after 2 weeks in hospital,dr’s said it was ms,scared the hell out of me.that was 2004 feb.now 9 years later iam on disablity,can only walk short distances,have to plan my days so i don’t get over tired.i have had several relaps.not a fun way to spend my retierment,but still try to.stay healthly.

June 5, 2013 at 2:15 pm
(37) Tom says:

I started having trouble with my right leg in ’78. Had back surgery to correct that. Had same trouble next year. Finally diaganosed me in ’81 with a visual evoked response test. Back then drs couldn’t spell mri. Am currently in power chair all time and have been for last 2 years. 1st diagnosis was myelitis which is similar to MS and when progressed they moved diagnosis to MS. Medically discharged after 24 years in army. Main symptoms are…fatigue, balance, double vision, some cognitive issues, and have to cath all time. Attitude is good. God allowed MS for a reason and I want to be an encouragement to others with or without MS.

June 5, 2013 at 2:22 pm
(38) Julie says:

I was diagnosed 2/2/79, age 34, 2 years after childbirth, increasing fatigue and odd sensations in one leg, then a collapse from fever with sudden onset of pneumonia. Retrospectively, RR MS triggered by car accident and trauma at age 18 (1963), and childbirth resulted in SPMS at dx. Progress slow, dramatically exascerbated by several severe physical strressors intermittently. Now 68 and require assistance for all activities of daily living.
So glad I never knew. I had years of freedom, married at 30 and might have chosen not to have a child. Husband gone at dx, but my beautiful strong son has been my abiding joy, and now a grandson.
Bottom line, once pronounced MS is a life sentence without parole.
Read you faithfully, but first comment. Thanks.

June 5, 2013 at 2:24 pm
(39) Suzanne Ponder Sparks says:

My diagnosis was made 1-1/2 years ago, at age 56. But I am fairly certain I had MS for at least 15 years, probably longer.

June 5, 2013 at 2:27 pm
(40) Brenda says:

It seems like forever. I started having headaches when I was in my early 20′s. Was not diagnosed until 50. Just 6 years ago.

June 5, 2013 at 3:14 pm
(41) Susan says:

I’m 55, was dx at 26 but had optic neuritis at 20. Looking back I see other indications. When I was in grade school for several years I would win the blue ribbon for long jump contest. The following year I came in almost last. I went to a small school and it was the same kids every year. Also, I tried and tried and tried but could never do a cartwheel. I took swimming lessons for years but could never learn to swim. I think I just didn’t have enough muscel strength due to MS. Fortunately I have had a very slow progression. I can still walk usually w/o assistance and I work full-time (no fatigue).

June 5, 2013 at 3:47 pm
(42) Shelley says:

Mine came quite abruptly. There were never any indications of neurological problems. I couldn’t stay awake and had dry heaves. I spent one month in the hospital being misdiagnosed. Then I found myself at UCLA ICU after not being aware of my surroundings. I remained there for ten weeks (ICU for two weeks). At the age of 57 I was diagnosed after having an MRI and two spinal taps. That was in 2003. I have been on Betaseron since and have had ZERO relapses. I’m truly fortunate the disease has not consumed my life!

June 5, 2013 at 4:25 pm
(43) Carol says:

I was diagnosed with MS in 2005 when I was 48. However, my neurologist and I have traced my first “relapse” or “MS incident” to an incident when I was 34. I had a severe vertigo episode that lasted a little over one week. Right after that incident, I saw “black spots” or small little blank spots for a few weeks. No tests were run either time, as I belonged to a large HMO in California that is notorious for not running tests. I saw a doctor for the vertigo and he said I “probably” had an inner ear infection, although he could see no signs of one. He gave me an antihistamine used for motion sickness. I saw a specialist for my eye problem and he said he could find nothing wrong with me and it would probably go away. Well, after about three weeks, the “spots” went away and I have never experienced them again. The vertigo came and went for years.So, I have had MS for at least 22 years. Who knows how long I had MS before I started showing symptoms. That answer is anyone’s guess!

June 5, 2013 at 5:40 pm
(44) Pam says:

Early 1980s I had every test available but nothing was wrong. Systems were with walking, head fog and finger numbness.

Then symptoms disappeared till mid 1990s. Symptoms were facial numbness with strange facial feelings as though something was crawling under my skin. Again, many, many tests indicating nothing was wrong. At this time it was suggested I see a psychiatrist. I was not nuts. There was something wrong with me. I questioned whether it could be MS……I was told the symptoms weren’t MS symptoms.

Then in January 2004 I could not lift a leg while hiking but it quickly corrected itself. In the Spring numbness in fingers again. Diagnosis was June 2004 at age 53.

Each time I had testing done it was at different healthcare institution in different areas of the country. All medical records were reviewed by each neurologist. If I would have been diagnosed in the ’80s it would have killed me. This way I did everything I set out to accomplish. Otherwise I would not have because the MS would have consumed or interrupted all my thoughts. It pretty much does now.

June 5, 2013 at 7:40 pm
(45) Cheryl says:

I’ve never had my neurologist tell me how long I may have had MS. Initially I first thought my first symptom started after I had major surgery September 1995. Right after the surgery, I started noticing that I was dropping things for no reason, and I couldn’t remember where I had put things. Not only couldn’t I remember where I put the item, I couldn’t remember where I had been to try and retrace my steps.

However, after recently learning that itching could possibly be a symptom of MS, I remembered an occurrence of severe itching that I had when I was in the 5th grade, around 10 years old. It felt like the itching was coming from inside my body rather than on my skin. It hadn’t happened before, and the only time it ever happened again was within the past year. I searched for MS and itching and found evidence that the two can be related due to issues with the nerves.

I now believe that the itching I experience back then was my first experience with MS. It took many years before my diagnosis — not until I was 47 — but given that I had experienced the itching, as well as an experience with severe nerve tingling whenever I bowed my head when I was in my early 30′s, I’m pretty sure I’ve had MS most of my life.

June 5, 2013 at 7:51 pm
(46) Msmum says:

I’ve had a rapid induction to the wonderful world of ms after my 15-year-old daughter was diagnosed late last year. She had had a couple of years with periods of fatigue attributed to mononucleosis and anaemia from heavy periods, but I knew something still wasn’t right – she had gone from being a highly athletic energetic teenager playing in state competitions to a complete ragdoll, having lengthy periods of fatigue and never regaining her full energy. Late last year she lost movement in her left side while away from home and after a period in hospital with testing and steroid treatment we received the diagnosis. I often wonder if she hadn’t been away and stressed/tired would the relapse have been so severe and would she have gone through years of lesser and undiagnosed symptoms before the eventual diagnosis and would this have been better or worse? We have naturally done a lot of reading and we feel very lucky that if she had to get this condition that it was now, with some therapies available and the ability through the web to connect with other peoples’ stories. Thanks Julie for your work and thanks to everyone for sharing your stories – it really helps.

June 5, 2013 at 8:16 pm
(47) Bhorsoft says:

I was diagnosed quickly. Nothing evident at all – in perfect health until one summer in 1985 I started having trouble walking. Some weakness and parethesia in my right leg causing me to walk like a drunk. Went to my internist and he couldn’t explain it. It went away after a couple of weeks and I was fine until the summer of 1986. Went to bed just fine and woke up the next morning with diplopia (double vision). Went to an ophthalmologist and got a very thorough exam. He really couldn’t find anything and started asking lots of questions. Somehow the weak leg episode from a year earlier came up and he almost immediately referred me to a neurologist. Unfortunately, he wouldn’t say why which scared the bejebus out of me.

I went to the neuro and was examined and had a talk with him. He asked me if I was willing to try this new-fangled machine called an MRI. Said there were only three in the country at the time and they were still using it for research. He said it was painless and my alternatives were spinal taps and the like so I instantly agreed.

When I went to get the MRI I had to sign all sorts of forms saying this was still experimental and that I wouldn’t sue the NIH or anyone else if my hair turned green, I developed abdominal warts or my testicles fell off any time in the future. Was put in the now familiar big machine that makes lots of noise. Back then no ear plugs and no contrast media. Results were pretty much instant. The neuro called me back to the viewing room, pointed to some white spots in the brain, said they were plaques and that, combined with my history, was definitive for Multiple Sclerosis. It was the first I had heard that term.

June 5, 2013 at 8:16 pm
(48) Bhorsoft says:

I was actually kind of relieved because I was worried about a brain tumor or something equally horrible and painful. Of course, these were the days before the internet so I had to go to a library to do some research on the disease. The neuro couldn’t (or wouldn’t) tell me much about my future prognosis I had to do the research myself. At the time there were no drugs so it was basically something I had to live with. I could be fine for a long while or go down hill pretty quickly. I came to the conclusion that I would probably be in a wheelchair by the time I was 50.

Here I am at 54 now and I am just starting to use a wheelchair after being diagnosed 27 years ago – a year after initial onset. I’ve only been using a cane for about the past 3 years.

The diagnosis really didn’t change my life until recently. I went back to school – twice for two masters degrees. I’ve worked steadily in my chosen profession and took up hobbys like golf, bicycling and motorcycling that I’ve only recently had to give up. I had very few episodes in the intervening years and it has only been since the secondary progressive phase of the disease has set-in has my life had to change because of the disease. That said, I have felt lucky over the years and because of it I’m still determined to live the best life I can despite the drastic changes my body is now, finally, going through.

June 5, 2013 at 10:57 pm
(49) Pam #2 says:

I was given an unofficial diagnosis of MS in late 2006 after a short episode of horizontal nystagmus (i.e., eyes like Marty Feldman!). The official diagnosis was given in early 2007 after tests for vitamin deficiencies, carotid blockages, and a hole in the heart. I was 51, and my MRI showed so many lesions that the report just said “>50″.

I have an immune system that really sucks (4 auto-immune diseases). When my first auto-immune disease appeared, I was 24 and a graduate student. I was coping with this and having migraines. I had migraines on and off for close to 10 years. Then, when I was in my late 40s, I had another period of migraines. Then came the MS diagnosis at age 51. My neurologist says I likely has MS at age 24.

I’m on Copaxone. I haven’t had a flare-up since the initial one. There are no new lesions and no active lesions. My only complaints are some fatigue and heat issues, which make me have temporary cognitive problems. All in all, life is good!

June 5, 2013 at 11:18 pm
(50) SmartyPants says:

I went to every expert, PT, acupucture, naturalist, chiropracter, nuclear science, tests they thought i had sympathetic nerve dystrofy in my foot from a sprain. Only after seven years of suffering, and falling and being exhausted at a high stress job, heat sensitive finally after spending over 3000 on all of it, my part even though i had insurance, my pt asked “Did your dr ever give you an mri? I went back to my lousy dr who told me to take off the ace bandage as there was nothing wrong with my foot, i fired him and got a new dr, demanded a MRI and sure enough. There was something wrong with my foot, it was half paralyized, finally i knew what was wrong with me, the vibrations no one else felt, the fatigue, i was so glad to find out what i had that i was just so thankful someone finally figured it out. Then later on I got scared.

June 5, 2013 at 11:40 pm
(51) Velma Conklin says:

i was diagnosed in ’05 when i was 54. i can follow my symptoms back to my early 30′s. i would have loved to have known sooner because i honestly wondered if i was ‘mental’. it would have been awesome to at least know that there was actually something physical wrong with me whether there was help or not. honestly, that was my first thought when i was told it might be MS “thank God. i now have an answer”.

June 6, 2013 at 5:19 am
(52) Chris says:

My neurologist estimated that, based on the MRI that was conducted, I probably had it for at least the previous ten years. He arrived at this number based on dark spots in the brain imaging where there had been lesions.

Nice to know – good conversation piece – but at the end of the day what’s most important for me to know is to how to manage it, i.e., meds, exercise, diet, reducing stress, being proactive about latest medical developments, etc.

Good luck everyone

June 6, 2013 at 5:29 am
(53) Chris says:

Julie, can you / do you have any information for patients that have MS but may have been dismissed from their jobs as a result of the impact from the disease?

I saw a post from Robert saying he had been laid off from his job ostensibly because of the MS. MS is covered by the DDA or the Disability Discrimination Act of 1995, which protects employees in the UK from termination of their job as a result of a covered illness (here is the link: http://www.legislation.gov.uk/ukpga/1995/50/contents )

June 6, 2013 at 6:14 am
(54) Terence Wilson says:

59 years to be exact! In 1954 I had a cycle accident and received a severe head injury in the left temporal region of my skull, right above the area of the cortex responsible for visual memory. An untreated blood-clot (embolus) caused a plaque which gave me temporal-lobe epilepsy and caused optic neuritis which was treated in a military hospital. Twenty years later I was diagnosed with MS at a London hospital for nervous diseases after falling down and having L’Hermitte’s Sign (Barber’s-chair’ syndrome). Seven years later I retired from full-time work. Within a few years needed a wheelchair and became incontinent. My neurologist said I have PPMS.

Incidentally I also carry the Viking gene – Haplogroup I-M170 (Y-DNA).

June 6, 2013 at 8:49 am
(55) Rick says:

I was diagnosed with RRMS when I was 26. Looking back I think that I have had issues since I was about 12 or 13. I can remember always being tired especially during the hot summer months. While other kids were outside playing I had to stay at home and rest.

June 6, 2013 at 9:07 am
(56) Bill Foxall says:

I was first diagnosed in the mid-1970s following an optic neuritis flareup. I am 75 years of age and am still ambulatory, with limited walking range. I take no medications for MS other than Amantadine and occasional Baclofen. Walking is also difficult to the pain of diabetic neuropathy. I can be thankful that my MS is such a benign form that it is more of s nuisance than a disability. Besides, I no longer have to rake the leaves or do the heavy duty Christmas shopping.

June 6, 2013 at 10:26 am
(57) Donna Seelig says:

I had my first symptoms 23 years before I was diagnosed. I remember it because it was after the birth of my first child and before my second. I probably wouldn’t have had a second child if I had known for sure. My symptoms more or less went away for 20 years. They came back and I had the old MRI and it saved my life because I had a cyst in my brain that was about to kill me. Since my symptoms started again, the fatigue has been pretty constant. I don’t know how I avoided it for 20 years.

June 6, 2013 at 12:17 pm
(58) Cheryl says:

I was diagnosed with MS in June 2006 at the age of 47. Initially I thought my first MS episode was after having major surgery in September 1995. Soon afterwards, I found myself dropping things over and over again. Then I noticed that I couldn’t remember where I had put things, nor could I remember where I had just been to retrace my steps. That soon went away, but then in 2002, I had the classic MS hug, that was misdiagnosed by a neurologist as being “getting old.” August 2004 was when I had the beginnings of my walking issues, which took two years to finally diagnose as MS.

As I think back on other strange things that I experienced in my past, I remember that when I was in the 5th grade, around 9 years old, I had a bout of severe itchiness that couldn’t be attributed to a rash or allergy. It eventually went away, but I recently learned, after having another bout of severe itchiness, that this itchiness can be attributed to MS. Maybe my itching was MS related, making me think that my MS could have been around a lot longer than I realized.

Another even that I experienced before 1995 could have been Lhermitte’s Sign. Whenever I bent my head forward, I would get a tingling sensation down my neck and into my arm. Because it happened around the time I started a serious exercise program, doctors thought it was probably a pinched nerve. No one ever came up with a true diagnosis, and nothing showed up on any MRIs, so again, it appears that I’ve had MS a lot longer than I originally expected.

Finally, prior to getting my actual diagnosis, I had extreme cog fog, so much so that I thought I was beginning to suffer from early onset Alzheimer’s. Thoughts would disappear down a black hole, and I had no recollection at all of what I was even thinking about.

June 6, 2013 at 5:25 pm
(59) Julia says:

I am sure my symptoms of poor balance/dizziness, (drunken sailor comes to mind), off and on started in 2005. My family dr. sent me to an ENT but of course buy the time I got into the specialist the symptoms were gone. This happened a number of times and my dr. finally said anxiety just learn to relax. After leg numbness and ‘foot drop’ in 2011, I had MRIs and low and behold lesions. Still no dx. After a seizure in 2012 and then a positive spinal tap and MRI with contrast the neuro finally says yes you have MS. Here’s a Rx for Copaxone… I imagine a lot of people have stories just like this.

June 6, 2013 at 8:41 pm
(60) Jeri says:

I was diagnosed 9 years ago, but a few of the symptoms that still bother me now were present over 20 years ago. I couldn’t get my right leg into my pants without help from my hand, had what the doctors thought was restless legs syndrome and tendonitis, and most often, I had numbness on the right side of my face. It was always blamed on severe TMJ problems. Now, I believe that the numbness didn’t have much to do with TMJ, although that’s still something I have to deal with. I still can’t lift my right leg high enough to get it in my pants leg, and I can’t steer it to my pants the right way, either. My face gets numb on just the right side, where my other problem areas are, too. I don’t have any “official” word on these things, but I’m sure I’m right. No one put the pieces together before the first exacerbation on my son’s 13th birthday.

June 6, 2013 at 10:21 pm
(61) Isabel says:

My first symptoms started about 15 years ago. My doctor thought it was MS, but the neurologist told me “You’ll either get better, get worse or stay the same BUT IT’S NOT MS”.
About 8 years ago (after my daughter was born), I saw another neurologist after the next major relapse – he said it was MS before the MRI to confirm it. By the there were 9 lesions !

June 7, 2013 at 9:45 am
(62) Laurie says:

I was diagnosed in November of 2004 when I was 40 years old but after educating myself on symptoms of MS I can look back and say in 1999/2000 I started having issues with my memory and some minor balance problems. I was 35/36 years old.

June 8, 2013 at 12:34 pm
(63) richard says:

after a collapse, six year ago, was diagnosed with transverse myelitis by a specialist who dead nailed it with tests including spinal tap. neurologist she sent me to was really wormy about calling it ms and dicked around six months before starting me on treatment saying i had to wait for another event but finally he capitulated. but actually, 10 year earlier i had a collapse and thought chiropractor cured me when really it was the tm but dr. would not accept that as an event ’cause it was when i lived in mexico and i went to no dr, i.e. not documented. so i know at least had it for 10 year before diagnosed. however, during all that time i had no symptoms ‘cept some difficulty walking – balance – after a few drinks but who doesn’t? the kicker is, i had no peripheral neuropathy until after ankle surgery from car wreck and when i woke up had numbness – the surgery somehow manifested that symptom and it was several months later when i had the most recent, second, collapse. they call it idiopathic but i guarantee it really manifested after the surgery.

June 8, 2013 at 11:37 pm
(64) Barb Kroll says:

I started with optic neuritis back in Jan. 1991 and was not “officially” diagnosed until April 2008. Had all the symptoms, but no lesions or spinal fluid abnormalities. I was a very frustrating time for me and my family. Always sick in some way or another with no apparent reason. I now have the best dr. I believe I can have and he listens to me and what is happening to me.

June 10, 2013 at 2:47 am
(65) Ammar says:

I was diagnosed when I was 39 years old but symptoms started 8 years before.

June 11, 2013 at 3:21 am
(66) Jayne says:

I’ve probably had MS since about 1950, but of course I only recognized it in fairly recent years. My first attack was in the service in 1968 and they said “maybe”. I was in pretty good shape for about 10 years and had another, then the diagnosis was made. In my early days there was no MRI or CAT scans or medications. Nothing much was known way back when I first experienced it and I scoured the libraries, finding the Swank Low Fat Diet Book and I stilll follow it now. I’ve had some exacerbations, but I know how to handle it pretty well at age 68. My arthritis is much worse than the MS.
I don’t think I could have gotten ahead of anything if I had known sooner about my diagnosis. Looking back, there were many symptoms that were mistaken for other problems.

June 11, 2013 at 10:30 am
(67) Marlyn Merriman says:

I was diagnosed last year at 60 3days after my birthday. I had numerous missdiagnosis including essential tremor, ocular migraine, a spur on my heel, disc damage and more. My consultant says it seems I had it for about 20 years but I think longer as I know I had symptoms right back to early teenage years which the hospital then put down to pulled muscles and tendons and my Mum put down to getting out of PT and hockey at school! I must say I am glad it was not diagnosed earlier as I possibly wouldn’t have had the confidence to achieve all I have in life. I hope a cure is found soon for all of us so we can live a normal full life. I have problems walking so use a stick and suffer as most of us with fatigue, numbness and blurred vision etc.,Numbness in my fingertips caused me to take the end off my finger while slicing a tomato an hour ago and when I talk to MS people they are full of stories about their “accidents” some a lot more serious than a sliced fingertip! So a CURE SOON PLEASE GOD !!

June 13, 2013 at 4:54 am
(68) rimmi says:

I was diagnosed with MS wen i was 35 now fifty., definitely must have had it much before, what added to the complication is severe osteoporosis too… have learnt to manage though. active physiotherapy with healing helps. Also go to work at a management institute as a professor.

June 13, 2013 at 11:09 am
(69) Nutrisclerosis says:

Hi,
I wanted to let you know about a Q&A panel I am organizing with Paul Jaminet the author of The Perfect Health Diet and Sarah Ballantyne, The Paleo Mom. I am also hoping to Have Dr. Terry Wahls on the panel. The Q&A will air in late August on The Super Human Radio Show. I am soliciting questions from people with MS or any autoimmune disease who have questions about using diet and lifestyle to control their symptoms. I was hoping you would help me spread the word about the opportunity to submit questions. People can email me at nutrisclerosis@gmail.com with their questions.

Sincerely,
Whitney Ross

June 26, 2013 at 2:03 pm
(70) Kimberly says:

I think it may be I have had MS since I was about 15 or 20 so that would be 25 years because I have had so many problems with my head and back and other problems that all the doctors kept telling me “it was all in my head” I swear if I didn’t have the optic neuritis I still would be thinking it’s all in my head

March 16, 2014 at 12:52 am
(71) Amanda says:

I was diagnosed at 30, upon much research my first symptoms were at less than a year old. Was told for many years, it was all in my head. Guess they were right.

March 20, 2014 at 6:47 pm
(72) Kristin says:

It was confirmed Monday 3/17/14. I am 24 years old. Not sure how to feel or think. was pushed along by the doctors for years, Acting as if I was faking these random symptoms. No clue how long I have had it. Seen this and read trying to figure it out. Thank you for allowing me to understand they can tell me and some of my questions might finally be answered :)

May 12, 2014 at 8:29 pm
(73) lester bull says:

I started to have eye problems about 18 months ago. I have had gout problems most of my life. But one or two indocine and it goes away. Other than that I don’t know of anything going on.

Les.

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