My nearly 20-year journey to get my diagnosis of MS
Arriving at knowledge from doubt and 'It’s me. Hi. I’m the problem. It’s me.'
Hi! I’m new — not to having multiple sclerosis (MS), but to being a columnist. I’m a daughter, wife, mother of two young adults, dog mom, sister, aunt, friend, college professor, pharmacist, avid reader, nature lover, and an MS warrior. I was diagnosed with MS in 2014, although I believe the illness had been in my life since 1996, rearing its ugly head every few years and being erroneously called all sorts of things.
During that first experience in 1996 with what I believe was an MS-related illness, I felt numbness, weakness in my left leg, and a decrease in sensations associated with sexual activity and bowel movements. I was preparing for a move by packing up my apartment and attributed my falls to the clutter and my clumsiness. I was young and naive, and the thought of having a chronic debilitating illness never entered my mind.
During this time, I was finishing my training as a pharmacy practice resident, preparing to move out of state and start a new job. I thought I was too busy to take the time to visit a healthcare professional about my symptoms.
Investigating my symptoms
A work colleague insisted I seek medical attention after she witnessed me fall. Subsequently, I spent a few days in the hospital and was given a diagnosis of acute transverse myelitis. I was satisfied with this explanation and predicted my full recovery within a few months. The diagnosis had the word “acute” in it, so there was no cause for me to be worried about a chronic illness. In my mind, I’d be on hold for two to four weeks, then everything would go back to normal.
Over the next 18 years, I continued to experience “unexplainable” neurologic symptoms. I think a lyric in Taylor Swift’s song “Anti-Hero” perfectly describes me during this time frame: “It’s me, hi. I’m the problem, it’s me.” (My daughter is a “Swiftie,” so I’m familiar with her music.) When you repeatedly seek help from healthcare professionals without answers or explanations, you start to question the validity of what you’ve experienced, doubting and blaming yourself.
I was given diagnoses, such as a post-viral illness, acute transverse myelitis (again), vitamin B12 deficiency, medication side effects, and a few others I can’t recall now. None stuck.
It was frustrating to have these “unexplainable” symptoms, get explanations for them, and then find out that the explanations were wrong. I was no longer naive and knew something was wrong, but I’d never let myself think about having a serious illness other than in occasional, fleeting thoughts — until I thought of it at the most inopportune time.
I had a panic attack while undergoing magnetic resonance imaging (MRI). I’m a “difficult stick” and had experienced multiple (at least eight) attempts to get an intravenous line inserted before the MRI, which seemed to significantly increase my anxiety that day. During the MRI, when I had a lot of time alone with my thoughts, I convinced myself I’d learn that I had a cancerous brain tumor. Overwhelmed, I had a panic attack.
After this experience, I realized something serious was going on with my health and that I wasn’t the problem. But I never once thought it was MS.
Learning it’s MS
After being hospitalized once, evaluated in healthcare systems in four states, visiting at least six healthcare providers from general practitioners to neurologists, completing two lumbar punctures (spinal taps), several MRIs, electromyography, and multiple blood draws for lab tests, I finally received the MS diagnosis.
I’ve learned a lot over the past two decades about myself and my health. The key knowledge I gained from my diagnosis journey included the following:
- It’s me. Hi. I’m not the problem. My symptoms were real and interfered with my functioning. Just because a healthcare professional couldn’t determine their cause, they weren’t any less real. I believe I always advocated for myself, which gives me a feeling of accomplishment. I eventually received the diagnosis that explained my symptoms and validated my experiences.
- MS can be a diagnosis of exclusion. That means ruling out all other causes before the final, life-changing discovery. This process can take a significant amount of time. My diagnosis journey spanned almost two decades. I appreciate the medical investigation that identified my actual illness, but with recent medical advancements, I still feel frustrated that it took almost 20 years to get there.
I’ve found that sharing my personal experiences with MS is a valuable learning tool. It helps me connect with others and promotes feelings of belonging and connectedness. I hope my column will help you find a sense of community and belonging, increase your knowledge about MS, and empower you to fight this illness.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Merlene Cook
I too was diagnosed with polyneuritis on the onset of numbness and tingling of feet and hands back in 1969. In the year 1971, I was diagnosed with MS. My first concern was I going to die. For 55 years I continue with relapsing remitting MS. Quite the journey. From 2 weeks to 3 months down with symptoms. Lost vision twice. Scary at times waiting to return 100%. That is why the DIAGNOSIS was a long time coming. After continuous rest and removing myself from regular life, I would return healthy prior to the attack. Never pushed myself and stayed away from stress the best I could. I am now 73 and only in the past 4 years, my condition is progressing /decline slowly with more permanent symtoms. Lesions are showing more in the balance part of the brain. Thank goodness for rollator walkers. Hard part is relying on devices no matter your age. Vanity. (Looking old ) My advice for living well ... remove as much stress in one's life ...that might be friends and relatives. Envelope yourself with people who get you and have the understanding with your best interest at heart.
Leigh Anne Nelson
I love your advice - "remove as much stress in one's life." I have always thought about this in the context of my work but should also think about my personal life. Thank you for reading column and also sharing your story.
Carolyn Mary Mann
Leigh Anne --
your story is so familiar. I too had a story so like yours . It will be fifty years on May 17 since my first attack took place. It was thirty years ago that I was officially diagnosed as having MS. . At least those young people who are finding out today they have MS do not have to wait so long. Thankfully there is so much more information .
Leigh Anne Nelson
Wow...30 years and I thought 18 years was an extreme example. I agree...I think individuals today do not have to wait so long for a diagnosis which is a blessing. Thank you for reading my column.
Nancy
Hi Leigh Anne
Me too! I was in my mid 30’s when my symptoms started, finally diagnosed when I was 52. I had similar experiences to yours with a variety of medical professionals, madness really.
I really do hope there is more awareness now when it comes to MS, especially within the medical community and I truly hope that women are taken more seriously when symptoms don’t seem to make much sense.
Nancy
Leigh Anne Nelson
I do not feel like being female in my case delayed the diagnosis but maybe I am being naive. I do understand the issue and the frustrations that go along with it as my mother is aging and has many chronic medical conditions that sometimes I think do not get the attention they deserve due to her age and gender. Thank you for reading my column.
June Patricia Turnbull
I was diagnosed with "Not having a brain tumour but we aren't really sure what you have so you may as well just go home" that was in June, 1977 some time ago, I know but at this time my sister was in hospital with a just as "unsure" illness.....eventually, during a RAF induction test, she was told to go home and her doctor would tell her what was wrong....HE did, she had MS....what on earth
was that? No one seemed able to tell us but it got me thinking about myself and after a little badgering with MY GP I was sent to hospital in Oxford where there were three patients all with MS and yes, I made it a fourth. I was supposed to have been over the moon that I didn't have a brain tumour but, at the time, MS seemed quite unknown. I started with losing the sight in my left eye and a few pins and needles....that progressed and over the early days it did mean not finishing my final term at uni but had done enough to get my degree and I went on to teach and later on write children's books....I have only been in a wheelchair these last 5 years but the worst of it are the pains I'm constantly in. The GP and specialist seemed stumped with those and I seem to be taking every single pain pill there is NOT CLEVER as I take a full handful three times a day. I do get a bit fed up with being told that I am doing really well....don't feel like it but I suppose nearly 50 years of having MS I am better off than most. If only I could still walk! Thanks for reading this hope you're better off than I am xxxxx
Leigh Anne Nelson
Thank you for telling me about how you advocated for yourself. I think that is so important for females with a chronic medical condition. Thank you for reading my column.
Tom A.
From my reading, driven by my MS since 1990-ish, you can split the group of those with MS into many types of diagnostic “narratives” (I don’t like that word). While your diagnostic experience sounds frustrating (to say the least), as it is for many, I don’t think it is typical. Certainly being told your life has changed without your input, is frustrating for anyone. But as medicines or treatments are studied and come out, it has become apparent that quick treatment not only prevents some damage that would have happenend, but it is necessary to make some subsequent treatment work. Without quick treatment (a year or two I suppose), you may be relegated to other treatments with less hope of near total permanent remittance. Now that is a big hope and is still for the minority, carrying significant risks, but they are saying it is possible (see MS Selfie, for example). I think it is important for newbies to hear that.
So in my opinion, that’s one important avenue for discussion. Another is for people like me- what we do after 35 years with MS. So I look forward to your columns and am glad you’re allowing comments. Welcome.
Leigh Anne Nelson
Thank you for reading my column. I agree...individuals diagnosed with MS today are very fortunate. With the use of advanced technology, they do not wait years to receive a diagnosis of MS, and starting treatment early can help slow the disease and hopefully improve their functioning long-term.
Elizabeth
I have had many different diagnosis’s over a span of 30 years that the only one I claim is the “waitenC” disease. Unfortunately, I have waited to see the floor coming to my face more than at least 60-70 times in the past 15-20 years. My dilemma is do I continue with the insanity of trying to get a definitive diagnosis after all these years? No, unfortunately, I internally hear the mantra - “continuing to do the same thing and get a different answer is the definition of insanity.” Do I think I know the DX - probably. However, I was born at a time when MRI is the absolute last word on a diagnosis. Receiving a diagnosis is a double edged sword. When there are treatments that slow the progression, that’s a blessing.
Leigh Anne Nelson
Your journey sounds incredibly frustrating. I hope you continue to advocate for yourself. Thank you for reading my column. I love the "waitenC" diagnosis - I have never heard this before but it is the perfect description.
Tanya Hunt
My niece at 27 was just diagnosed with MS after losing sight in her left eye. It has recovered now except for colour but she has new lesions on her brain. We just got back from Mexico where we had additional testing ( I’m in Vancouver Canada and the health care system here has collapsed and it’s more likely you die than get treatment here). We will be going back in summer to have the intense MS treatment there. It’s the only treatment that can stop the progression of the disease .
Leigh Anne Nelson
Your travel from Canada to Mexico for treatment must be such a burden on you and your family in so many ways but your niece is very fortunate to have you help her on her MS journey. Thank you for reading my column.
Margaret Dunne
I was diagnosed with ms after almost 20 years of being told it was wear and tear by my GP and after visiting a lot of different doctors and specialist I was eventually told I had lapsing remitting ms. So far it's manageable and I can cope with it I'm in my 60s now and hoping it won't get worse . I'm glad to see I'm not the only one thought I was losing my mind for a while as no one could tell me what was happening.sorry for going on .thank you for sharing your story
Leigh Anne Nelson
Thank you for sharing your thoughts.....Your journey sounds incredibly frustrating too - knowing something is not right but not getting an answer for years is hard! Thank you for reading my column.
Betty Simnitt
Your story sounds so familiar to my own. In 1995 - I was given a false positive diagnosis of HIV - based on an anonymous testing I did as an RN, I didn’t want anyone to know. Being gay I reached out in AOL chat groups for like minded individuals…..found a wonderful woman that lived far away , but in a town I flew into often. Once we met it was instantly became a goal to move…. Once here, the wonderful news was that I did not have HIV, but they didn’t know why my T-cells and B- Cells were all messed up.
Time went by, I had frequent falls, and overwhelmed by fatigue. Still nothing…….. first MRI was of lower back and finding of Ankylosing Spondylitis- as the cause of my weakness and pain in my back.
Years went by…..unexplained symptoms- numbness, fatigue, vision changes every year, - in the meantime I went on to get my masters in nursing and become a Family Nurse Practitioner,,,,,the stress of the job, the pain that I tried to hide, the fatigue that showed up constantly, then it happened…….optic neuritis….. I had a headache for 4 days, my wife s enough….so I went to the optomologist said “ we only see this in MS” it was that statement that had all the alarms going off, and all the chips started falling into place……but by this time age was a factor and they had to rule out the age stuff first… but the Lumbar puncture was the deciding factor and……the series of events that changed my life…… a few years later I was unable to work, fast forward a few more years, I am in a wheelchair for most long walks. I have to sleep sitting up because of esophageal dysfunction related to MS, and neurogenic bladder that had me in a near death situation with autonomic dysreflexia. I am in what the neurologist is calling the active progressive stage. I am miserable, and I find it hard to fight it every day. Now with yet another case od aspiration pneumonia because of the dysphagia, and paralysis of vocal cord.
I am so tired.
Leigh Anne Nelson
Thank you for sharing your story. I believe others will learn from it. I am so sorry you are having serious difficulties with your MS and overall health right now. I hope you have a knowledgeable, caring healthcare professional to help you on your MS journey.