Wow. Just Wow. You are all my hero’s. What you’ve been through and continue to deal with as a part of life, is an inspiration. Thanks for sharing your experiences.

Mine started in my teens, so it is long, but here’s 38 years of a weirded out immune system and its affects in a nut shell.

I was diagnosed at the age of 17 while I was attending university in Europe. I woke up one morning blind in one eye and the vision in the other one was blurry. The pain felt like I’d been poked in the eyes. The docs said that it was optic neuritis and that it was most likely due to MS. They gave me prednisone and I came home shortly after most of the vision had returned. That first bout of ON left me with 40% vision loss (blind spot), in the left eye.

A few months after returning home I had a digestive emergency which required an intestinal resection. I was diagnosed with regional enteritis & peritonitis followed the surgery for a perforated intestine. A few months after that they gradually got numb and then I pretty much lost the use of both legs. Transverse myelitis was the diagnosis but I recovered within a year from all of that. I was 19.

I was in my third year at university a couple of years later when I had another bout of ON, but at the same time I’d been having bouts of painful spasms in my right hip that I thought was a sports injury. I’d have to say that the hip thing combined with the ON was when I first started to learn about MS symptoms, stress and the whole package. It was then that I started to meditate, do yoga and learn about nutrition.

We tried prednisone for the ON but I had an allergic reaction to that and landed in the hospital. While in the hospital there was another drug reaction; to morphine, which was tried for the hip pain. Once things stabilized, I was given some muscle relaxants and sent home to ride it out, which took around a month. The docs blamed the regional enteritis for the drug reactions and I have been sensitive to a lot of drugs since then.

While I was in my last year at university, I fell a few times when my right leg just gave out while jogging and I dislocated & fractured the right shoulder on one of those falls. I saw a neuro after the shoulder surgery because of persistent numbness in the arm and he blamed it on the MS. The sensation came back some but never completely.

By the time I was 22, I had some residual symptoms of numbness, weakness and spasticity in the legs and spine along with visual problems that came and went. The severity of those symptoms now vary according to fatigue and other stresses.

I continued to have bouts every couple of years that mostly affected my legs but between bouts I worked, remained physically active (farming, biking and running mostly), and competed in equestrian sports throughout my 20s and 30s.

I fell in love with a wonderful man when I was 22 and after living together for a couple of years, we married. My then future husband knew going in that I had MS and said that he wasn’t bothered by its potentials, but I had to be sure so we waited to get married. I had a few miscarriages in the next couple of years and we gave up on having kids after we lost the last one at 16 weeks. MS was blamed for the miscarriages.

In my early 30’s I had a really bad bout of ill health that lasted for 2 years. In that time I had another attack of TM, MS, ON, Regional enteritis and was introduced to Autoimmune Hypothyroidism. I was so sick of seeing specialists, having tests and trying different treatments that I finally called it quits on all medication and doctors, retreated to the farm and hid out there until things came around on their own.

It seems odd to say this but one of the nicest things my husband ever said to me was in the middle of that particularly bad bout, “Even if your body becomes a quadriplegic, drooling mouth breather, I’ll still love you.” He never faltered. All in all, we had a good life and farmed, both worked off the farm in our respective professions and carried on through the unwelcome visits from MS and other autoimmune diseases.

When he was diagnosed with a brain tumor and then bone cancer, he refused treatment and we moved off the farm into town. I hired a nurse to help me look after him at home and I was blessed with fairly good health during that time. I was so grateful for that because it allowed us to be together at home for most of his last year. He passed away 10 years ago. We had been together for 22 years.

I’ll be 55 this year and the last 10 years have been challenging to say the least. A seizure and more MS symptoms put me in the care of a new neuro in 2010 and shortly after that he changed the diagnosis from RRMS to SPMS. Big deal, it didn’t change a thing. He can call it whatever he wants. I have my own term for it .

A couple of years ago another round of ill health began and it has been a roller coaster ride ever since. The immune system reacted badly to the Human Parvo Virus and caused a form of arthritis in the small joints of the hands and ankles. It took a while but we finally got that under control.

Right after that, a defect in the heart was discovered at which time I was also diagnosed with autonomic neuropathy. I’d been having trouble with my digestion, weird dizziness and narcolepsy and testing for the cause of that revealed the heart defect.

The neuropathy slows down the function of the digestive system and the heart. I had surgery to open a valve in the stomach so it would empty easier but have been on a fairly mushy (blender), diet since then. I also take digestive enzymes to help with digestion and things have been fairly good on that front lately.

The neuropathy affects the heart so that the heart rate doesn’t increase enough to meet the demand for blood during exercise or digestion of large meals (I avoid those but if the stomach doesn't empty properly, it does the same thing as a large meal). I take a CNS stimulant (Provigil), when things are really slow to keep the heart rate up so the guts digest food and so that I don’t fall asleep/pass out during the day.

I still exercise as much as possible because if I keep it healthy, the heart can beat with more force to compensate for the slow rate but unfortunately that increases my risk for stroke. I’ve had two in the last couple of years and am working hard at recovering from the last one now.

This last one hit in the thalamus and affected vision, cognition, memory and sleep. It has been a hard road back but I’m getting there.

I’m too old to die young so I’m in this for the long haul.
Sense of humor intact.

With love, Erika

erika,

your story touched my heart. i'm so sorry for the course of your MS and all you've been thru.

i was particularly touched by the loss of your sweet husband. i'm so sorry.
you're an inspiration in strength.

Yes, thank you all. I have been in tears and some laughter here.
I am re-reading them all.

Thanks for the read.

After reading your stories, I am so grateful to God that He has only put a little bit on me. And Erika, I would be afraid to go to sleep, afraid my heart would just slow down to much

Thanks for your stories and comments to mine.

While it is true that I did loose my DH, I must say that I gained far more in the time that we had together than I lost. So it is with others that I have loved and lost; for I have had such love in my life. I rest my mind on that and the love that I share with those who continue to be in my life, like all of you here.

Doydie, I can't think of a more peaceful & merciful way to move on from this mortal coil than to have the heart slow down until it painlessly stops while one is sleeping. I have no fear of death but when it is my time, such a process would be my preference.

I'm very much looking forward to others' stories, for in sharing them we all become stronger.

With love, Erika

These are interesting and heartbreaking stories. One lesson I learned is that MS doesn't burn itself out.
Sal, what a good idea to have us post stories. I know I remember the people, but forget the stories.

Here is mine:

Like many of us, I had vague symptoms since my 20s-- periodic crushing fatigue was all. At age @ 40 I got tingling in my hands, crushing fatigue, bizarre outbursts of laughter,
heaviness in pelvic zone. I asked my GYN and he replied, "What could possibly cause such disparate symptoms? " to which I said "How should I know? I thought I could tell you
and you might say, "It's the Tinkleberry Syndrome" ...


Two months before my big attack at 47, am now 63, I thought I had a bladder infex but the tests were normal. Then, my legs began to hurt and I felt like I was walking through molasses, needed a wheelchair for mall shopping. I gradually regained much of my functioning but not all.

Then it was MS Lite, just many mini flares, until 7 months ago-- wham! Legs and one arm became heavy and some spasticity. I am still trying to go into remission from that.

I took Avonex 2003-2004. In midst if injecting faulty batch, I nearly died from it causing
attack on my lungs and heart with permanent damage. So, I haven't done Meds since. I do Swank Diet and Ceylon cinnamon, rest 1-2 hours day, work only part time, swim daily, surf every week. Since my last attack, I can only stand up on smaller gentle waves. Big waves I have to lay down on or ride on knees. No big deal really.

8 weeks before my first big attack, age 47, I read that people only get MS under age 45. i shouted out to my husband, "Yay! One good thing about being 47 is I am too old to get MS" ...Dang it!