Over the years, I’ve worked with several non-profits that focus on diagnosis, treatment, and support for those that suffer from MS. In my quest to spread awareness, I’m clearing up misconceptions and providing answers to questions commonly asked about this disease.
My MS Story
I was diagnosed with MS in 2006 but was recently told by one of my neurologists that I’ve likely suffered from the disease since my first neurological symptoms appeared in 1993 when I was 25 years old.
What is Multiple Sclerosis?
Multiple sclerosis, or MS, is an autoimmune disease of the central nervous system. Essentially, the immune system misfires, attacking the myelin sheaths that coat the brain and spinal cord.
Multiple Sclerosis Symptoms
Generally, symptoms of MS can include vision loss, severe fatigue, impaired balance and coordination, and more. The disease manifests differently in different people. Some MS patients remain symptom-free their entire lives while others may have severe chronic symptoms that don’t go away and end up wheelchair-bound.
What are the First signs of MS?
MS manifests differently in different people. Common initial symptoms can include, but are not limited to:
- Impaired Vision
- Balance Problems and Lack of Coordination
- Unsteady Gait and Trouble Walking
- Numbness and Tingling
- Muscle Spasms and Pain
- Weakness and Fatigue
- Dizziness
- Bladder and Bowel Issues
- Sexual Dysfunction
- Impaired Cognition
How is MS Diagnosed?
Multiple sclerosis can often be very difficult to diagnose. The most common methods of diagnosis for MS are MRI (magnetic resonance imaging), spinal tap, also called lumbar puncture (to examine cerebrospinal fluid for antibodies), and testing for impaired nerve responses using an optic test called EP (evoked potential).
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Is MS More Common in Women or Men?
Multiple sclerosis is far more common in women than in men. It is thought that up to 80% of those who suffer from MS may be female.
Do You Die from MS?
Multiple sclerosis is rarely a fatal disease. In fact, the leading causes of death for those with MS are the same as those in the general population.
Celebrities with MS
Over the last few years, a number of young celebrities have been diagnosed with multiple sclerosis. They include:
- Selma Blair
- Jamie Lynn Seigler
- Jack Osburn
Do You Have MS?
What is your experience with multiple sclerosis? Do you know someone with this disease? Leave a comment and let us know how MS has impacted your life.
Susan says
I was diagnosed with celiac in 2003. I hoped that with a gluten-free diet my legs wouldn’t feel tired all the time. Unfortunately, the leg fatigue continued. I spent hundreds of hours online trying to figure out what the cause might be, as numerous doctors had no suggestions. Looked at symptoms of MS a couple times, but the “episodes” didn’t match my experience. Went to a neurologist, had a spinal tap (he missed the first time…), no diagnosis. Neurologist #2 mentioned Primary Progressive MS (hadn’t heard of that type before), but then left the practice. Finally, in 2007, I made an appointment with an MS specialist at Johns Hopkins, who confirmed the diagnosis of PPMS, based on MRI results. About 10% of patients with MS have PPMS.
With PPMS, your symptoms are about the same every day, but over time there’s a slow progression of the disease. I feel fortunate that I have this type, as I know what to expect each day. However, like many other MS patients, I wage a constant battle against fatigue. I estimate that my energy level on a very good day is about a 5 or 6 out of 10, and closer to 3 or 4 at the end of a busy week. I work full-time, and spend about 2.5 hours (total) each day on my (public transit) commute.
My legs are tired each and every day, even when I wake up in the morning. But I keep moving, and I think that may be part of the reason I’m not in a wheelchair today (although I use one for long distances, e.g. airports).
Thank you, Elana, for sharing all your recipes, advice, and experience over the years. I’ve followed your blog/website since some time before you began sharing Paleo recipes, but long before your MS diagnosis. I wish you the very best of health, as we journey through the wild ride called life…
Elana says
Susan, thanks for your amazing comment! So inspiring to read and hear your perspective! Big hugs and thank you for sharing your story here :-)
Marylou Montgomery says
Elana,
Thank you for sharing. There are always new folks coming up who aren’t familiar with MS, and it’s nice to educate them. They might have a need to know some day! I too have had symptoms since my early twenties, was diagnosed at age 45, and at age 75 I’m still able to maintain my independence with a power wheelchair, a ramp van, and grab bars in stragegic places. Raised five children and helped with eleven grands, the youngest age 8. I love Elana’s Pantry! Thank you for all you do to help us enjoy our healthy eating!
Elana says
Marylou, what a wonderfully sweet comment! You are so amazing and a total inspiration to me :-)
Mary. B. Hennessey says
Elana, I am a Celiac and very careful with what I eat. I am now using lactose free milk for my tea and no more rice pudding that I love. Recently I was diagnosed with a tremor ( I am , other than that, a healthy 83 year old. Good blood pressure, sugar levels no surgeries in over 60 years. Lately I feel shaky, a little nervous. Wish me luck.
Elana says
Mary, you sound like an amazing 83 year old and I’m so glad to be on this self-care path with you :-)
Helen says
Hi Elana,
Check out LiveDiseaseFree.com for some great info on MS, causes and hope!
Elana says
Thanks Helen!
DARLEEN M EDERER says
Laura, I love your website except when you continue about all the negative comments about MS. There is enough information on the web about this disease. Let’s talk about moving forward and living the best life we can. We all have to deal or cope with MS and not get caught up in all the garbage out there. Clean up your environment, diet and exercise and things will get better.
Elana says
Darlene, thanks so much for sharing your opinion here. Writing this post was very helpful to me on many levels and I won’t go into all of them right now. On the most practical level, I am asked many of these questions each day and I thought that being able to refer folks to one place for this information would be helpful, but I understand that this is not the case for you. Thanks again! :-)
Holly says
Hi Elana, great article. Montel Williams the celebrity and talk show host turned MS advocate also suffers from the disease. He’s taught a lot of us so much about it and how health and nutrition greatly affect one’s journey with MS. I wish you well.
Elana says
Holly, yes I do recall hearing that Montel Williams had been diagnosed with MS some time ago. This disease has impacted so many lives and is very sad.
Lassie says
As a health care practitioner, I work with patients with MS. The newest research into this and many autoimmune diseases links them to gut dysbiosis. So interesting that you have chosen the foods you do. I love your website. I have a strong feeling, although obviously don’t know you from Adam, that your MS is better managed due to your keen understanding of good food choices. We are in a health epidemic that is preventable but health literacy in the USA is atrocious.
Elana says
Lassie, thanks for your stunning comment! We’re very much on the same page. I am conscious of my dietary choices all the time and doing whatever I can to heal my gut and rebuild my gut microbiome. Here’s one of my favorite unlocks for gut healing:
https://elanaspantry.com/how-i-healed-my-gut/
Thanks for being here with me!
Elana
Josie says
True.
Laura says
I hate MS.
My husband has just started an infusion – not sure why – he keeps getting worse. I have tried to get him to follow the Wahl’s Protocol, which has been helpful to many, but he loves his sugar, carbs, and milk. Why bother cooking all those veggies if he adds cookies at the end. Sigh..
Elana says
Laura, I know how you feel! It’s so challenging to watch our loved ones do things that are not in their best interest. I simply remind myself that I’m not all that perfect either :-)
Robyn says
My brother-in-law currently has MS and has had it for approximately 35. When he was first diagnosed he went for treatment by the renown Dr. Swank and continues to use his methods. Another family member was diagnosed with MS, but it was later discovered that he actually had (and later succumbed to) adult onset Alexander’s Disease. Both diseases are hard to watch when they take over the person’s inability to move, eat, and maybe even walk. However, the forward momentum being made in research is just amazing.
Elana says
Thanks so much for your comment Robyn!!!
Cobra Commander says
Elana,
I have MS. I just want to say what an inspiration you are to me to keep on keeping on. Your recipes are great and easy to follow, not to mention delicious. Thank you for giving back to those of us who share your struggles.
Elana says
Cobra, thank you for sharing your struggles here with me, so lucky to know you via the website :-)