I am a writer, family physician, and MS warrior (diagnosed in 2009). I'm writing an article for a national publication about the frequency of delayed diagnosis with MS, as part of MS Awareness Month (March). I am looking for a couple of people who are willing to share their stories as part of my article. My purpose with this article is to spread awareness about MS and put out a plea to increase education and awareness among physicians, as well as the general public.
If you are willing to share your story - or you have other thoughts about delayed MS diagnosis and what to do about it - please let me know!
Thanks!
Lisa Doggett
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Welcome! Mine was due to many fails over 15 years. I saw an ophthalmologist for a "fuzzy gray donut in my eye" and was told that the optic nerve atrophy my optometrist noticed was likely just a congenital issue when the nerve was formed. He also said stress could be contributing, and it was nursing boards time. Since he said this, and my "not ON" had magically fully recovered, I cancelled the $500 brain scan I couldn't afford. I looked it up myself, ON is painful, so that wasn't me. MS was leg stuff and mobility aids, so that wasn't me either.
I moved around a bit for work, and sometimes after my episodes of mild sinus headache and blurry vision, I would see an optometrist to update my prescription. They would always ask if I had a family history of MS once they saw no yellow flashback, and I would reply no, and that a MD checked me out years prior. No referrals, and it wasn't painful, so why would they know it was ON. Young people with astigmatisms can have frequently changing acuity, right? My changes were mostly in one eye, though I have astigmatism in both. Repeat this story for 13 years, when...
I was sent to ER with Lhermitte's and vision changes, again no pain. No scan, but a referral to a neuro. In the meantime, a sweet neurosurgeon at my work ordered a cord scan since he was concerned I would paralyzed by a tumor. Whew, no tumor! 🎉 No lesions on those slices, but there was a signal abnormality. I was denied a brain scan later by the neuro and told I didn't meet the criteria for him to think it would be MS. I was at one of the best hospitals in the world, so it must be true, I don't have anything like MS. A reaction to the flu shot I had the week prior? Okie dokie! I was ok with that, I had just cared for an end stage MS 20 something year old, so no thanks! 😱😭 My husband was floored and said I definitely had MS.
I called the MS clinic to see about getting an appointment, but was told I had to be diagnosed already to come there. I had recovered completely once again, so I gave up 🤷♀️ How do you get diagnosed if you can't get a scan to diagnose it, but can't be seen unless you are diagnosed 😵💫 My husband gave up at this point, but noted that if he's right, it will be back again soon. (Careful to tiptoe around my denial)
9mo later, he was right. My optometrist, this time, referred me to an ophthalmologist who diagnosed me on the spot. Both eyes had nerve damage, he said. He ordered the scans just to confirm it, and referred me to a neuro. Brain, cord, old, new; the whole textbook party had been there for years. Permanent central vision loss in one eye and color in the other. My reflex exam reminded me that I never took off my shoes when I saw that first neuro 🤔 Did he even check my eyes, shoot, I was so sick then I couldn't remember 🤷♀️🫣 I wish someone had went with me then. How could I meet criteria for a scan if he wasn't looking for anything?! 😵💫
There are many stories in this group similar to mine. My only ask of you is that you include somewhere that ON is NOT always painful. I have been to recent presentations by neuro's teaching about MS, and they all say it's always incredibly painful. Never once was it for me. Maybe my story is rare and I'm a freak, but had anyone not been focused on checking the "painful" box, including myself, I might have been treated a decade earlier and prevented a few lesions that impact my daily life. Maybe 🙃🤷♀️ Perhaps also a warning to not trust a neuro who never asks you to take your shoes off.
Wow! You've had quite a journey - and suffered through many failures on the part of our healthcare system. I'm so sorry. Do you mind sharing the total amount of time from your symptom onset to diagnosis? What are the impacts from MS on your daily life that you think might have been prevented from an earlier diagnosis? Why do you think the doctors dismissed some of your earlier symptoms? Finally, do you mind sharing your name/city/state for possible inclusion in my article? I am so grateful for your help.
Thank you! 🙏 It took 14 years to be diagnosed. The main ones are central vision loss and spasticity. I think having no pain with my vision changes was the biggest issue, but complete recovery is a close second. I prefer to remain anonymous. My medical care was in 4 states during those 14 years.
My optic neuritis didn't hurt, either. Thankfully they just did the tests anyway. Which doesn't seem like much of a stretch. That really sucks that they got so hung up on that one detail and completely kept you from getting diagnosed for so many years. So sorry that happened to you!
Well, I've had consistent symptoms since about 1980 but didn't get a diagnosis until 2020. If they'd done the ol' "dunk me in hot water" test in the beginning, they would have confirmed it, but I was told that it was just growing pains that I'd have to get used to.
After that, they insisted that I was just stressed and needed to take tranquilizers. When I developed problems swallowing and speaking, the technicians told me that I just wasn't moving my tongue the right way. Eye pain and randomly-blurred vision were diagnosed by the ophthalmologist as "there's nothing wrong". Toppling over backwards like a tree, so quickly that the people with me couldn't even catch me and leaving me with concussions, was "You must be a closet alcoholic. Your symptoms don't match anything known to man, so you need to face it and go to AA."
An MS specialist told me that my only problem was that I smoked, and he was going to prove it, but no tests were necessary. The next neurologist just told me flat out that he refused to consider MS for me and to not come back unless I developed new symptoms.
To give them all credit, once MRI's were invented I passed them all with flying colors. I also passed two evoked potentials, including one the week I got diagnosed. My GP never gave up. She realized early on that there was something wrong, and eventually she felt it was neurological. It just took forever to get the right doctor and the right test results.
Thanks so much for sharing your story - and for responding so quickly. May I ask: How were you ultimately diagnosed? You said you "passed" the MRIs - does that mean they were normal? Also, are you comfortable providing your name/city/state for me to possibly include in my article? Regardless, I appreciate the info you already shared. I'm glad you finally got some answers, but it's ridiculous and frustrating that it took so long. I wish you all the best.
Hi NorasMom, and I thought I heard some pretty bad misdiagnoses! I was told to lose weight, see a shrink, and take allergy meds. But "go to AA meetings" is a new one! Just incredible! Don't know whether to laugh or cry! 🤣😭
I can laugh now, but it still makes me so angry. A casual friend had taken me to the ER and stayed with me the whole time because the staff wasn't taking me seriously. This was something like the third time this had happened in as many weeks. Each time left me with a concussion, and it was terrifying. Then this doctor walked in and announced that to the whole crowded area. He wasn't even the one who'd treated me! I was mortified, because I'm not a drinker, but even if I had been that was so callous. I had a few more of those falls before they stopped, but I never again went to the ER for it.
I find it difficult to let the anger go too. But every time I tell my story, it's like a one hour therapy session. 25 years later, and I still have trust issues with doctors. They will never understand that their callous words and behavior can stay with a patient forever. Take care 🤗🤗🤗
Wow. I'm sorry norasmom. That doctor had better hope Karma isn't a real thing. I can't believe how horrible and mean - callous is a good word - some of these doctors are. Of course something so traumatic is going to stick with you. I don't blame you for being angry.
Words realty do matter coming from your Dr! When my neurologist told me that MS was only going to get worse 😱 ( I didn't have any mobility issues @ the time.) Talk about a Downer! I have a new neurologist now ,she seems more understanding and informed regarding MS.
Sadly, many of us in this group suffered for years, trying to get diagnosed. I understand that M.S. can be difficult to diagnose, that sometimes a diagnosis can be a long process of eliminating other medical issues, and it can be a long, frustrating road that finally leads to answers. Mine was a five year journey from h@#$.
I started having all kinds of odd symptoms starting around 1996. I noticed pins and needles, weakness, and dizziness. I went to my family doctor who did the usual blood work, and a quick physical exam. He found nothing amiss, and said I was fine. Several months later, the symptoms came back, I went back to my doctor, got another round of blood work, was told there was nothing wrong and that was that. I decided to get another opinion and went to a new family medicine doctor. Again, I got a quick physical exam, a blood test, and was told nothing was wrong. I could not imagine what was going on, but I knew there was something that wasn't right. I just felt really "off".
I repeated this scenario over a four year period with five different family physicians, and not one of them considered that my symptoms might be neurological. I was told by one doctor I just had allergies or an ear infection. I was told by another I would feel better if I lost 20 pounds. One said I was making things up, and one gave me a referral to a psychiatrist.
By this point, I was extremely depressed and frustrated and almost ready to give up, convinced that perhaps it was, indeed, all in my head. I was losing hope.
One day, I was looking though a health related magazine and came across an article about something called M.S. There it was! It all made sense! My crazy, unrelated symptoms that would come and go had a name. I couldn't believe it. I immediately made an appt. with my family doctor, brought him the article, and told him I thought I had M.S. His response? He started laughing. I kid you not. I will never forget it. I was devastated. He said there was no way I had M.S. and sent me home.
Later that week, I was crying to my chiropractor about how frustrated I was, that I knew something was terribly wrong, and I could not get one doctor to take me seriously. My chiropractor asked about my symptoms and I told him about the dizziness, the pins and needles, the weakness and numbness and the confusion. He immediately put me in touch with a Neurologist.
One year later, after extensive neurological tests, two MRIs 12 months apart, and a lumbar puncture, my Neurologist looked at me and said: You have M.S. By this point, I felt nothing but relief. I was not crazy. I was not making it up. I didn't need a psychiatrist. Five long years, and I finally got answers. Now I could begin my journey, learn all I could about M.S., get on a disease modifying therapy, and move forward.
That four year period of my life affected me deeply, and unfortunately left me with an unhealthy distrust of the medical profession. I have spent years working to get over that and can report that I now have a wonderful, trusting relationship with my Neurologist of 16 years.
Yes. Once I was diagnosed, I was put on a DMT right away. Over the last 25 years, I have been on several different DMTs. I feel very fortunate that there were a few therapies available back then.
Thank you so much for sharing your story. As a family doctor myself, I find it frustrating and sad that you had to endure years of difficult symptoms while being dismissed by multiple doctors, even after your (accurate!) self-diagnosis. I'm so sorry.
Would you be comfortable providing you name and location (city/state) if I decide to use your story in my article? If not, are you comfortable with me sharing some parts of your story anonymously?
I'm so glad you're doing better now and have a trusted relationship with your doctor. I'm hoping to make that time from symptoms to diagnosis shorter and easier for others in the future. Thanks again!
Thanks so much. I really appreciate your kind response. I think it would be wonderful if you could share these stories in hopes that others will not have to go through what I and others endured. Although I would love to read your completed project on this subject, I am not comfortable sharing my personal info. Feel free to use my story though. I would love to know that my experience helped even one person. All the best! 🤗
There was a recent thread that dealt with diagnoses in general that had some more horror stories in it, although I suppose you would have to get permission from those people since they aren't answering you directly. There are more heartbreaking ones here:healthunlocked.com/mymsaa/p...
in 1987, at the age of 28, I was trying to train for a marathon. On each run at 3 1/2 miles my right foot would flap or slap the ground. I had to slow down and walk for a while before beginning to run. I saw a neurologist who based on a basic clinical exam diagnosed me with a paroxysmal kinesthetic abnormality.
Eventually this symptom resolved and I went on to run 17 marathons. Though I did have several falls while training due to right foot “scuffing”
In 1997, I began having bouts of trigeminal neuralgia that became more intense, frequent, and resistant to Tegretol. I did see a neurologist again who said because I had no sensitivity to light touch of my face, it wasn’t TN.
In 2008, a severe exacerbation of TN landed me in the hospital and my MRI showed multiple lesions consistent with MS. I was diagnosed with MS.
Of note, that was my third MRI. I’m a nurse and nurse practitioner and because I suspected MS, I sent myself for 2 MRIs that were normal prior to this. So it took more than 30 years after my first symptoms (foot drop) before I was diagnosed.
Though if I’d been diagnosed in 1987, there were no treatments and I likely wouldn’t have run marathons or pursued my advanced degrees. I guess it all worked out.
Thanks! I am so glad you got to run those marathons! It does seem like delayed diagnosis in the 1980s and 1990s was common, but treatments were so much more limited so the delay didn't necessarily mean you missed out on important medications. I think a delay now is a bigger deal given the development of effective treatments.
I was officially diagnosed with MS in October 2022 after a positive "o band" test form a lumbar puncture. I had brain and spinal mris and a lumbar puncture five years earlier for trigeminal neuralgia. My wife was convinced, due to me gait, that I had MS at that time but even though the tests showed brain and spinal lesions since the "O band" test was negative, my neurologist concluded I did not have MS. (although he did not completely rule it out)
For at least 10 years prior to that I had complained to my primary care physician of loss of balance and occasional falls as well as loss of memory. I always included those complaints on the questionnaires they had me complete. You're getting older, I was told. (i'm now 70).
So now I have PPMS and have recently started Ocrevus. I am very concerned about the negative impact on my immune system, but it's the only drug FDA approved for PPMS. The potential benefits are a crapshoot, but it's the only chance I have to slow the progression.
My physical capabilities are significantly deteriorated especially over the last three years. I wonder sometimes if starting Ocrevus at least five years ago I would not have deteriorated as much.
Thanks so much for sharing. I'm sorry to hear of your physical deterioration. You've had quite a journey! PPMS is a tough condition to contend with - I'm glad you at least have a diagnosis. Wishing you all the best,
Here's another story for you: in my 20s, I began having trouble with stairsways: always falling up (not down). Now I suspect it was intermittent foot drop; I thought I was just klutzy. In my 30s, there were several times I rose from a kneeling position only to go straight back down without warnings. I thought I was just lightheaded. In my 40s, divorced and returned to my teaching career, symptoms began to increase. I was puzzled because I could no longer wear shoes that didn't close over my instep. I realized later that the foot drop had become constant. In my 40s, on a camping trip, after a long hike, I saw a flocks of birds invisible to others. These turned out to be a swarm of floaters: the first ophthalmologist I saw said the optic nerve was swollen and that I probably had a brain tumor. He referred me to a noted eye clinic. There I was told it was a virus in the fluid of my eye, probably there since birth. No one used the words optic neuritis with me at the time though it was noted in my charts. Since that time, I have complained to internists about blurry vision (like a fog in my eyes) and stiffening feet and been dismissed (been made to feel )as attention seeking. In my 50s, after a professional training (I was conducting these as a consultant), I left the campus where I had been dealing with a hostile group. As I walked to my car, the fog descended in my eyes, so thick that I found a wall and sat on it, hoping it would lift. Simultaneously, my hearing dimmed, blotting out the sound of adjacent freeway traffic. Ten minutes later, my sight and hearing were normal again but I was frightened. This time, when I saw my internist the next morning, he ordered an EKG, again dismissing me because it was normal. I retired at 65, leaving a metropolitan area for a 20 acre farm where I hoped to garden, raise hens for eggs and keep a few goats for their milk. I continued to tell a new internist about stumbling, falling, blurry vision and eye pain. Then, one day, tending hens, a pain shot from my left jaw up my face; as if I had been struck by a cleaver or lightning. It lifted, only to come back intermittently, every time stopping me in my tracks. I saw my dentist who thought perhaps a root canal was necessary. He referred me to a specialist. There I learned it was not a root canal, but he prescribed a high dose ibuprofen, and again the symptom (of trigeminal neuralgia) gradually faded though it can still be triggered by something unexpectedly brushing the left side of my jaw. Finally, the month I turned 70, I went out at dusk to secure animals for the night. As I bent to latch the coop door, I fell without warning. I rose, bent, fell again. There was no pain but I could not walk or stand. As I was crawling back to the house, a visiting friend, came looking for me. She used a fireman's carry to help drag me towards the house. By the time we got there, I was able to walk with support. She left the next day after making me promise to call a doctor. We both thought I'd had a stroke. I self referred to a neurologist at a teaching hospital where I was diagnosed (bloodtests, LP, MRIs) just days before my 70th birthday. That was 13 years ago. My gait is impaired and all the other symptoms I've had for decades come and go: I realize that very soon I will be dependent on mobility aids every day.
My apologies for this saga (but you asked!) I am grateful for the diagnosis, for this on-line community, and for MSAA and NMSS, two organizations that have taught me so much about MS. I feel fortunate in knowing that I am not a hypochondriac, a menopausal hysteric, or an attention seeker. My symptoms were not imaginary. They continue to be real.
Thank you so much, "GoatGal." What an amazing story. Would you be comfortable sharing your name/city (town)/state if I decide to include bits of your story in my article? I am so sorry you went almost your entire adult life with symptoms of MS and no diagnosis. I'm glad you at last got an answer. Wishing you well,
I would be glad to help in any way; just let me know, when/if you need the information. I was so relieved to finally have an answer for the weird symptoms, because like so many others, I knew something wasn't quite right and I'd been made to feel bad for asking questions.
Dear Lisa, would love to be able to share my story with you, but unfortunately,mine is one of the few I have ever heard of that was remarkably fast. With in a couple of months of recognized symptoms to diagnosis
Me too. I was seeing a doctor for a non-MS back issue and was coincidentally having 'classic' MS symptoms (numbness on one side of the body). Of course there were other things going on for years but there weren't disruptive. In reading these other posts, I see there are so many symptoms of MS and everyone's story is unique. I would have had a similar story I think if I hadn't seen that doctor for an unrelated issue.
Thanks! I'm glad you got a quick diagnosis. I did too, actually, but I'm trying to bring more attention to the delays that so many others have experienced. I appreciate your sharing!
Hi Formerbikeguy 🙂I was diagnosed right away because my mom had MS. So far, I can't complain, after reading same of these "horror stories " my first symptom was nystagmus ( rapid 👀 eye movement) , which led me to my 1st mri. But in retrospect, I believe I had symptoms back when I was going through nursing school? 🤷♂️
Thank you for sharing your experience with me, I think back and it's kind of funny I was so " glad"to get the diagnosis, the diagnosis which has so completely changed my life. But just to have some reason for all the strange stuff going on.
I understand that many diseases can mimic MS symptoms but I think that a MRI and lumbar puncture may be the closest methods of identifying MS. There is a new blood test that can help rule out non-MS diseases too.
I don’t know if this will be helpful but I if having MS at least 15 years before diagnosis. If this puts me in the delayed diagnosis category I’ll let you know. I’m pretty sure I know why I’m not quite sure about the definition of delayed diagnosis. LMK
I consider the diagnosis "delayed" when it requires going to multiple doctors over the course of months to years before you get an answer, especially if you could have been started on disease modifying therapy, had the diagnosis come sooner. But I don't know that there is a formal definition. Feel free to share if you'd like. It's helpful to hear everyone's experience.
I had the first sintom in 1998, my lips couldn´t feel. My diagnostic in 1999 was fast,lumbar punction, and after other sintoms as neuritis, otitis, my right hadn´t work. And Avonex. And in 2005 Rebif 44. My right leg didn´t work in 2004 and 2005, and also in 2005 a little facial paralisis , and 2006 my right arm can´t move. I stopped of working in 2007. but I was smoking since 1995 until 2017.
I don´t work now, and my ilness MS is stable, without problems. Only when in my house with my parents I have tension and my right leg in tension become with pain. I am living in 2024 with my parents because the rents are high in my city now. And I couldn´t rent an apartament for living alone and without stress, because I usually writte, since I studied or I worked, and read, living alone. I was living in this city alone since 2009 until 2023. And before I lived alone in 2005 until 1998, and after since 2003 until 2006.
So I think as I was living alone it was for me moments for writing and reading and resting, working or not. For walking. And bicycle.
Since 2007 in this city with sea, without working, I have had until 2023 my health in relation with the calmnes or quiteness, much better. And MS stable without working until now.
Until I hadn´t boyfriend, I live free and writting , reading, walking, bycicle, and avoid tension.
I was 30 years old when MS happened in my live, in my 7 years working without MS and after 7 years working with MS, as a teacher for foraign students, from Swediss, Germany, Finland, Noruega, Italy, ....from all planet, in the south of Spain. Málaga, and the school until 18 since 6 years old in the nord of Soain, Leon. And I was living since I was born until 6 years old in the north of Spain, Gijon. The city when I am living now.
I was atletic in the school, but in the south of Spain, Málaga MS since 1998, because the sun, the sport wasn´t usual. The sport appeared again in the North without so much sun in 2007 with MS.
My family is 3 brothers and my sister and me. Only we have an other ilness in the family which is Diabetes, an uncle that finished her live because of diabetes (without middle leg and fingers cutted in her feet), my old brother also have diabetes now, and in my case the sugar is high sometimes. But I try the sport always, that is in relation with my happiness or no.
if the begining of the MS is the probiotic stomach, bacterias, I have had a bacteria in Marruecos in my stomach, diarrea because of an omelette, in 1996. Maybe is it the reason of the begining of MS.
Hi there. It took until 2021 to get a diagnosis of MS despite having had a few symptoms since at least 2009. I have thought this was the case because my version of MS (PPMS) did not present in the more typical manner. I had a few seemingly disparate symptoms (balance issues and urinary hesitancy chief among them) but neither had tingling in extremities nor optic neuritis. I saw an MD who specialized in balance issues and he ordered an MRI. Subsequent to this the diagnosis was fairly quick.
Thanks for sharing your experience. I'm glad you finally got an answer, but I'm sorry it took so long. It is harder to diagnose with atypical symptoms, but we doctors need to have MS on our radar. Often we don't.
Well, we didn't get the NY Times or NPR (I tried!), but Public Health Watch did publish my article today on delayed diagnosis and MS that so many of you helped with. Please take a look and go "like" and reshare my posts on LinkedIn, Twitter/X and Facebook.
I'm sorry I wasn't able to include more of your stories, since I hit major word count limits, but all of you helped so much and contributed to this piece.
Thanks for your support. Let's hope others see this piece and can get a faster diagnosis.
Also, for those who are interested, please check out my new memoir: Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis about my transformation from physician to patient with MS while directing a community clinic. It's on Amazon, Audible (I narrate the audioversion), and some libraries - please request it, if yours doesn't have it! I hope you enjoy it!
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