Can you tell me a little about your MS story? As little or as much as you'd like.
September 14, 1999. Funny how we never forget THE date. I saw water spots on my computer screen, sadly they would not come off as much as I tried. Of course, after going to the doctor, I found out the spots were being caused by my MS. This symptom, in addition to weakness on my right side, and fatigue were the signs my doctor needed to know to begin the testing for MS. LUMBAR PUNCTURE, MRI. Both revealed the u detouring cause of my symptoms.
What was the turning point in your MS journey where you knew you needed to do things differently? If you've always done what you're doing since diagnosis, how did you learn about it?
I knew I had to be my own advocate. Being a positive person by nature, and with 3 daughters under the age of 16 I knew what my doctor was saying to me about lifestyle changes were necessary. Sadly, my neurologist seemed to only understand the negatives. She said, and I quote, “If you have stairs in your house, you should move. If you drive a stick shift in your car, you should sell it and buy an automatic. If you work full time, you should quit because eventually you are going to find you have to rest all week just to be able to shop on the weekend.” She was convinced all of these things were inevitable within 5 years. She then handed me 3 pamphlets entitled, Why my mommy can’t play with me. Why my mommy is in a wheelchair. And, why my mommy blah blah blah. I decided the negative approach from her was enough to make me write my own book.....(still in progress all of these years later) Why my mommy is kick-ass even though she has MS. Before leaving I told her, “In 5 years when I WALK up the 3 flights of stairs to this office, you not only will owe me a steak dinner, but you will owe me an apology for DIScouraging me instead of ENcouraging.”
What are some things you've done to do "whatever it takes" to improve your health and MS symptoms?
Years into my condition and after much frustration, I did make some lifestyle changes. I learned to say NO, PERHAPS ANOTHER TIME. I allowed myself to let people know that I only do things one way and to do my best when doing them I would want to be AT my best. For others that was important to me. For myself, if my best was just getting out of bed for the day, I could accept that. But learning to say, PERHAPS ANOTHER TIME rang true and helped take pressure off of me to be the go to person for everything. On a daily basis, I committed to making my bed EVERY SINGLE DAY. If I could not do ANYTHING else on some days, I knew I accomplished the one task I committed to doing no matter what...whatever it takes.
~ Brenda
Can you tell me a little about your MS story? As little or as much as you'd like.
Symptoms started spring 2017 and I got my diagnosis autumn 2018. Tingling legs, numbness, tired...
What was the turning point in your MS journey where you knew you needed to do things differently? If you've always done what you're doing since diagnosis, how did you learn about it?
Right from diagnosis I where set on a drug that seems to help me... But I also do a lot to stay healthy: I eat anti inflammatory food, do a lot of yoga and meditation and try not to stress as much as before. I had already started with all of this before the diagnosis, but increased in doing good for my body after.
What are some things you've done to do "whatever it takes" to improve your health and MS symptoms?
Eat healthy, no meat, n0 sugar, no gluten or dairy. Take supplements, do yoga. Say no to things i don’t want to do or don’t have the energy to do. This is the hardest: I love working and have always worked a lot, and been much more social before...
~J
Can you tell me a little about your MS story? As little or as much as you'd like.
I actually had urinary urgency as my first symptom that I know of. I went to my PCP to test for UTI and when that didn’t rest positive, referred to a urologist. He said I eat too much wine / chocolate / citrus and sent me on my way with an OAB medication. Several years later, my entire right leg went numb. Went to PCP, assumed back injury, got Lumbar MRI which showed nothing, referred to neurologist. Got a physical exam and full MRI which showed the lesions and got a diagnosis.
As soon as I was diagnosed I did my own research on the internet and fell into a spiral of fear and anxiety. I had a pretty severe relapse involving my entire right side and went to the hospital to get IV soul Medrol. I had a friends mom who has MS recommend The Wahls Protocol which I read and implemented quickly. I also learned of AIP and did that for a while as well. I found hope in their stories and hoped I could heal as well.
What are some things you've done to do "whatever it takes" to improve your health and MS symptoms?
I try to follow Wahls as close as I can. My diet is extremely different. I try to get gentle movement in throughout the day. I try to sleep more. I take supplements especially vitamin D. I did twice a week physical therapy for a while. Electro stimulation. Sunlight. Stress reduction. Drastic sugar consumption reduction. Almost everything I do is to try and maintain my health although I do have “bad” moments and poor choices still.
Can you tell me a little about your MS story? As little or as much as you'd like.
I was first diagnosed after optic neuritis in my right eye leading to migraines and double vision. Realistically my first symptom has been nerve pain and dizziness that both lasted for a month at different times earlier before my diagnosis.
It was in the few months following my diagnosis and having to choose a medication where I knew I couldn’t keep living as I have been if I wanted to stay as healthy as could be. It has taken a lot of research online and help from mentors and coaches to learn!
Saying no to certain commitments to protect my health, implementing a pill box to take my Vitamin D daily, cooking more meals with veggies and nutrients.
Can you tell me a little about your MS story? As little or as much as you'd like.
I was diagnosed with MS 9 years ago. My first symptom was pins and needles in my legs. I thought it was a pulled muscle or something because my legs just didn’t feel right. I went for a jog because I thought it might feel better but it didn’t. I was watched for MS for around 5 years before I got the diagnosis because I didn’t have enough markers. So when I was diagnosed it wasn’t a complete shock but still wasn’t fun. I’ve had pins and needles from my chest down, the MS hug and Lhermitte’s sign.
I was sick all the time, felt rundown and just horrible. I upped my exercise and started eating right. I researched different diets to help MS and how exercise helps. I started riding horses again, a childhood passion and did aerial yoga.
Fix my diet (most of the time) the more junk I eat the more pins and needles I get in my face. Getting the right amount of sleep and trying to exercise more. The basic things I always took for granted really help to give me a better quality of life.
Can you tell me a little about your MS story? As little or as much as you'd like.
Very first symptom was the hug! Back when I was 20ish....had it off and on all throughout until I was 41, when I passed out and hit my head and it bled. After that I noticed my entire right side of my body was weaker then the left. Had an MRI, it showed lesions...had another MRI a year later and it showed a difference in time and space and there I had my diagnosis at 42! I’m about to turn 45 soon.
Hmm...I’m needing a change currently actually
I try to take a little pills as possible. I hate them. All of them. I loved PT. But the fatigue is so bad that I can’t get going at home.
Can you tell me a little about your MS story? As little or as much as you'd like.
I was diagnosed last March after experiencing expressive dysphasia for a week. I found it difficult to speak because I couldn’t say the words I wanted to say. I then had an MRI and was then told the next day to go to the hospital due to the amount of inflammation and activity occurring on the MRI. Stayed there for 3 days and was given high dose of steroids. Then was referenced to an MS Specialist and started on Tysabri.
I knew I needed to refine my diet to reduce foods that caused inflammation and increase my workout regiment.
Reduce sugar and dairy intake, limit Alcohol consumption, workout consistently
Can you tell me a little about your MS story? As little or as much as you'd like.
I’ll start by saying that my diagnosis is “MS-like” still because I don’t have the changes on MRI needed to officially make the diagnosis. About 14 years ago, I started with left upper shoulder pain that crept up the brachial plexus. Then I got numbness and tingling in my feet and then hands and trouble walking. A friend who is a neuroradiologist saw me walking differently and asked about it and told me to go to the ER. They did MRIs and tests and admitted me. They thought it was autoimmune peripheral, but shortly after that I had cranial nerve problems (feeling of face). I rapidly got a lot worse with walking. I was found to have way too active reflexes and stiffness (dystonia). Things slower improved with a lot of work, with one time of worsening (relapse). In the last 2 years, my eye muscles are affected making it hard to read a book. I know it would be hard to formally be diagnosed with MS, but if I were there are treatment options. Neurologic autoimmune strangeness like MS does not qualify for treatment. I have not had an MRI in the last years. I cannot work anymore. I cannot walk much and the reading/seeing issue really limits ability to work academically. AIP has helped pain issues and symptoms. I’ll emphasize that this is MS-like in affecting nervous system, peripheral and central. It rapidly became worse twice and most of the time is pretty stable, just not normal. The nerve problem to eye muscles was different in that it slowly got worse and then has stuck at that place the last year.
I got hospitalized almost 4 years ago with problems from medications. I decided to try gluten-free and then Wahls or AIP a few months later. These helped.
Doing AIP can be quite challenging. I really stumbled when I could no longer work at my previous profession. I jumped into a new possibility, but then eye issues happened, so now am working on another possibility at home. I like helping people and hearing about obstacles overcome to do so. MS and my variant neurological problems are tough because how much they can change life. I can read on my phone one eye at time and I am glad of that. Humans have so many ways to live. When walking then seeing is hard, I am trying to emphasize creativity that is not dependent on those challenges.
Can you tell me a little about your MS story? As little or as much as you'd like.
Diagnosed in July 2015 after thinking I had a migraine. Had an MRI on a Tuesday and was called back within an hour to come in the next day. Was told something was found and it was only one of two things-a brain tumor or MS. Appointments made right away with specialists-both MS and neurosurgeon for the same day in Denver which was 3 hours from our house. Neurologist took one look said cancel the appointment with the surgeon, it’s MS and away we went. Looking back I had several symptoms but in the months leading up to it numbness in legs and arms, dizziness, and then terrible headaches (which was from a large active lesion come to find out.)
Working with a personal trainer to build up strength
~Anon
Can you tell me a little about your MS story? As little or as much as you'd like.
Diagnosed in ER by a Dr whose grandfather had MS. I had chest pains & left arm was numb. The official diagnosis would take months to complete though.
Hmm. Probably when my neurologist threw up his hands and changed the diagnosis to SPMS. I had tried several rrms treatments up to that point but steadily declined. He said the end goal was to try to keep me out of assisted living. Yikes! That’s really when I had to look at alternatives to “science”.
This when I discovered neuroplasticity. I’ve tried physical therapy, which addresses some aspects, & yoga. Lately yoga has improved my overall condition though. I’ve also increased my vitamin D intake too, as I was tested very very low.
Can you tell me a little about your MS story? As little or as much as you'd like.
My first noticeable symptom was numbness on the right side of my body from my shoulder, down my arm and down to mid thigh. Then shortly after had a strange tingling feeling in my abdomen when I would look down. Later finding out that this symptom was from lesions in my cervical spine.
I learned about Terry Wahls in January of 2019 on a podcast featuring V (paleo boss lady) the story really struck a cord in me, not knowing why I was so intrigued, but come to find out that it was exactly what I needed to hear to start the right path once finding out that MS was a possibility when my symptoms started in June and was finally diagnosed in September of 2019.
I have completely eliminated gluten, this was the first thing I did. Then implemented the Wahls protocol and reduced my stress by not over committing and knowing when to say no to extra things that don’t serve me. I also started working out and continued doing yoga which was already a practice I enjoyed.
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