Nadine's 41 year story

2 min read

I was diagnosed with MS in 1975 at the age of 22 years. WOW what was happening to me? I knew very little about this disease and soon learned there were not many resources to turn to for information. My neurologist was not much help in answering questions and I do not know if he just didn't know what to tell me or didn't want to scare me. He did tell me that my brain was inflamed and just go home and not worry unless I had more issues. This was after being hospitalized for a week, numerous tests ie: spinal tap, EEG, EMT and then being sent home to "take it easy". How was that possible? I found that after I was home, I could not hold a gallon milk jug, I couldn't carry grocery bags, I was walking a bit slower and just was not quite as energetic as before.

Then the numbness of my right side abated and I was normal again! I thought, at the time, being young and probably a bit ignorant, that I was going to be fine! Just one incident and I was good to go! Wrong! Move forward a couple years, new neurologist, new symptoms and another spinal tap. This confirmed that I did have multiple sclerosis. So I did a little research and found this was for the rest of my life! Now what? My husband, at the time, was not ready to be in this scenario for the the long haul. We were divorced (a big stress) and I was on my own! Still being young and energetic I was not going to let this get me down.

After a few moves to get my life resettled, I found a new boyfriend, now my husband of 35 years. We have endured many ups and downs, made it through 2 pregnancies successfully and all the trials of life in general.

There have been many stories over these years that life has thrown our way. I feel that a positive attitude and living life at a little slower pace has kept me going. I am on a DMT drug that seems to keep my symptoms low, try to eat healthy meals, attend yoga classes, and go many of the places I like. It is a slower pace now, as I don't walk as well as before, my energy level is quite a bit slower than when I was young, and my cognitive sense is declining.

Through the years, since my diagnosis, there has been much research done, new treatments, new testing, including MRI's, which I have had many, and a lot of public awareness.

There is still a little uneasiness, though, as quickly as my life changed when I was diagnosed 41 years ago. I could wake up one morning, unable to walk and start this journey all over again.

There have been many other incidents, that I have not included, but I just wanted to tell a short version of my experience.

Nadine Wise

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DonnaFA Member
Hi Nadine, Thank you for being here and sharing your story. It's wonderful that you have found a thoughtful partner and a rhythm that has made life a gentler journey. Please know that you're not alone and that we're always here to share support or just a friendly ear. - All Best, Donna (Multiple <a href='https://Sclerosis.net' target='_blank' rel='noopener noreferrer ugc'>Sclerosis.net</a> team)
normabeth Member
Hi Dinie! Thanks for sharing your story, which I already knew, as we are sisters. I'd like to comment and tell a bit of my story as well. I have so much admiration and respect for you and the way you handled your diagnosis at the time, and the many ways you had such a positive impact on the lives of those around you in spite of your diagnosis. I was also diagnosed with MS at the age of 55. I have had symptoms since I was in my late teens, which (in hindsight) were probably MS. Of course, like many MS patients I was told there was nothing wrong with me, just stress, lack of this, or too much of that. After Nadine's diagnosis, I began asking my docs if it was even remotely possible that I could also have MS. Naturally, they all said no way, and besides there were no good tests and no cure. This continued even after MRIs and DMTs became available. In the spring of 2000, I learned that I could take early retirement and still belong to my employer's retiree medical insurance system. I would have to pay a large portion of the premium, but it would be much less than buying insurance on my own. I intended to work as an independent consultant, or work part-time or seasonally. I retired, we sold our home very quickly, and my husband of nearly 35 years and I left the community where we had lived for 10 years to begin traveling in our camper in search of the place where we would spend our retirement years. After only a couple of days on the road, my husband began feeling somewhat ill. We saw several doctors along the way, who prescribed things and suggested a thorough check-up for him as soon as we became settled. Before we had settled on a community and purchased a home, he was diagnosed with terminal pancreatic cancer. We very quickly settled in my brother's community, where he was admitted to Hospice, and where I still reside. I had also started feeling unwell shortly after we began traveling - numbness and tingling in various body parts, extreme unexplained fatigue, tingling in my upper neck, back and down my arms with some head movements, vision disturbances.... After my husband's diagnosis, I ignored my symptoms, chalking them all up to stress, and concentrated on caring for him. We had rented a house when he was admitted to Hospice, in a town where I knew no one except my brother. The week we moved here, I collapsed one evening, losing all of the feeling and control on my left side. I managed to stand up by holding on to the bathroom counter and made faces in the mirror, wondering if I'd had a stroke. I didn't feel it was safe to drive, didn't know quite where to go, had no doctor here myself, and my brother was out of town. Of course I called Hospice, as I really couldn't leave my husband alone at the time. The RN director came to the house (dressed to the nines-she had been at an evening event of some kind), came in and checked my vitals and sent me to the ER. They eventually said I needed to see a neurologist first thing. I had an MRI and received my diagnosis 2 weeks before my husband died. Fortunately, this wasn't an unheard-of disease to me. I knew Nadine's story, knew her prognosis, and had known of a great aunt who also had MS. I feel very fortunate that I didn't have to go through the uncertainty of an unknown diagnosis as so many have. That is such a scary situation, I know. Next long-story-short: I am now 71 years old. I started dating a man in 2002, and we married in June of this year. I think I am doing well because of my positive attitude and stubbornness, making an effort to rest, eat well and exercise, and most of all to having a loving and supportive community, which includes an active local MS talk support group. I know this has been a long saga. Thanks for reading it, and thanks and MUCH love to Dinie for being the "pioneer" and setting such a great example. Norma Hamm
jlnewport Member
I'm so happy to see you found a good man to stand beside you thru your journey. I was married when I was diagnosed at age 41. He hung around for a few years but then told me he "couldn't deal with" my MS. My divorce was finalized on what would have been our 30th anniversary. That was 15 years ago. I learned a lot in that time. How to take care of myself, how to handle me and how to arrange a good medical team to deal with the MS on my own. It's not easy but who said life would be! I still have hope that there is a man out there for me. I'm not really lonely, I have 2 11-year-old grandkids that occupy a lot of my time but it's not the same as having a companion, right? So now you give me hope that there are still good men out there. I enjoyed your story and wish for good health and happiness!
Member
Hi Nadine, Hope this is a good day for you. My first symptoms occurred 18 December 1974 when i was in US Army Officer basic at FT Sill, OK. My optic neuritis and "woozie arms and legs" abated before any diagnosis was made. I understand that this is not uncommon. On Novemeber 14,1984, I awoke with everything dead feeling form the waist down.I was finally diagnosed in March 1985 after months of testing and resultant useless multiple office visits. AFTER 6 YEARS OF countless OFFICE VISITS FOR PAIN AND DVELOPeING PROBLEMS, sorry hit caps lock, I decided my Duke Trained doctor was ineffective. He kept explaining that I was imagining my pain for six years as in his opinion there was no MS pain possible. One of the two of us in his office was wrong about the pain issue. I left for the local Mayo Clinic and met my new doctor who only saw MS patients exclusively. After an 8 Am office visit I spent the day going from various medical departments in the clinic bei retested and updated MRIs etc. At 430PM the same day I met with my new doctor again and she reviewed all the test results with me. I was back the next morning for my first infusion to relieve my 6 years of chronic pain that my previous doctor said I couldn't experience. I was out of pain, albeit temporary by noon that second day. There was real pain with MS but most important there was a way to get medical relief. That started a 10 year course of treatments at the Mayo Clinic. I learned more about MS and my body with it;s own version of MS. After losing medical insurance due to being terminated from my job of 8 years due to my MS limitations. Illegal but I chose not to pursue redress. I left with multiple sales awards from our national product supplier and a viable customer base. Within a year of inattentive management by my former employer all my accounts were lost due to poor business decisions made in handling both the customer and our supplier. The supplier pulled the franchise and handed it over to a competitor at no cost by the competitor. Interestingly enough that supplier, again through mismanagement and poor customer relations lost the franchise to a 3rd supplier again selected by the national supplier. In the meantime I flounderd going from a Type A lifestyle in business to zero overnight. I started a home cruise sales business that I had to close due to lost eyesight. I could no longer read a computer screen or printed material without hugh magnification. Due to loss of insurance I had now switched to care at the VA and was eventually moved into a 100percent disability both with the VA and Social Security. This was a smooth process due to the competence, care and concern of my Mayo MS doctor expert. All paperwork sailed through the complicated systems which I solely credit to the excellent competence of my Mayo doctor. My vision was eventually corrected at the VA after years of semi blindness, No reading, no TV, I was unable to see to drive or go out without help. Reading a wobbly computer screen was impossible. Finally the VA low vision clinic, which the resident VA opthamologists were un aware even existed, issued mini binoculars in an eye glass frame for distance vision as well as "Coke bottle bottom? eye glasses for jumpy blurry reading. Apparently my vision loss was due to another rare disease Fuch's Dystrophy which has not been tied to MS. I was finally given a cornea transplant and two replacement lens due to treatment damage causing cataracts. After all of this, my point is learn about your health problems, understand them, evaluate your treatment a your confidence in your doctor. Don't settle into the lazy boy chairs and let third party incompetent doctors or insurance companies, medicare drive your life's circumstances. Be aggressive and proactive. Learn to recognize incompetence or government hurdles effecting your health and well being. Today I am clumsy, slow, restricted to bilateral canes and scooters, golf carts etc. I can pee or poop without appliances and medications. Of course we have all been there when we do not want to pee or poop it happens at the wrong time and place ruining your day and causing severe embarrassment. I drive with hand controls and I frankly wish even able bodied people drove with hand controls. Better stopping times due to quicker reactions. I have avoided becoming a total MS recluse because I have a concerned helper that gets me out of the house and does tasks in the outside I can;t due but I can still supervise. I drive tractors with buckets to lift things and a back hoe to dig holes. Plus a ride on zero turn mower operated by hand controls. A 4x4 side by side and golf cart to tour my 22 acres so that minimal leg usage is needed. I feel strongly that this activity has helped me escape the drudge of inactivity and helps me get out of the home. My helper is there when my wife chooses not to help with certain outdoor chores. She now has medical issues of her own to deal with that remain unresolved. Another story for another day. CAN DO attitude is much better than a private personal pity party about what you can not do any more. Three mile runs and hiking the rough boonies with the infantry for long hours are nothing more than a distant 40+ year memory. Scuba diving and high school track are even more distant memories. BUT WE Ain't Dead yet so let's move. With family get out. With friends, get out. Think it through and make it happen. Don't become an MS Hermit mulling in a dail mud bog of self pity.