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Old 02-12-2015, 10:23 AM   #11
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I was diagnosed in March 2007 with MS after having a fairly severe exacerbation. I had noticed in the year prior to the attack that I was experiencing tingling in my legs whenever I went for a walk. I was also having pt for my right knee during this period because of pain from arthritis. A few weeks before Christmas 2006, I fell in my shower on the same knee. I was in a knee brace and more pt was ordered. I first has to use crutches and then a cane to get around.

A few months later I experienced a weird pain/tightening in my left rib cage. My pcp diagnosed it as costochronditis. A few days later I noticed that the left side of my torso (rib cage to upper leg) was partially numb. I went to the ER; it was the weekend and they said I had shingles. I went back to see my pcp on Monday and he said I had no sign of shingles and sent me to the ER at a bigger hospital in Champaign/Urbana. They did a MRI of my spine without contrast and said I had a herniated disc. I then had an appointment with spine specialist who said that was not true (had a few bulging disks) and I needed to see a neurologist.

My pcp then ordered a brain MRI and referred me to a neurologist. MY pcp called me in the morning of March 29th and said he wanted to see me. I thought I was going to be told I had a brain tumor, and was relieved when he tole me I had MS. A few weeks late the neurologist confirmed the diagnosis after an additional mri with contrast of the T spine and a spinal tap which had o-bands in my spinal fluid.

He also believed I had MS for several years with mild symptoms. My left foot has been partially numb for about ten years, but doctors never really paid attention to the problem when I would mention it.

It took me about two years to recover to a degree from that first exacerbation. I use a cane to walk when I leave home, and I cannot walk very far without severe pain in my back and left leg. I have two lesions on my t spine and a few brain lesions. My MRI's have been mostly stable since the first year.

I ended up retiring from college teaching in May 2012, and I still miss it sometimes. However, I felt like I was doing the students a disservice because I just didn't have the energy to do a good job and I was getting sick a lot.

I have tried betasereon (allergic), copaxone (too many severe IPIR's), and tysabri. I went into shock during tysabri infusions and tested positive for antibodies. So I have not been on any dmd'd since 2008. I have tried a number of medications for symptom control, but I was either intolerant to them or they did not help.

Last edited by barb02; 02-12-2015 at 02:57 PM.
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Old 02-14-2015, 02:22 PM   #12
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Wow. Just Wow. You are all my heros. What youve 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 heres 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 Id 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 Id been having bouts of painful spasms in my right hip that I thought was a sports injury. Id 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 wasnt 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 30s 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, Ill 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.

Ill 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 didnt 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. Id 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 doesnt 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 dont 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. Ive 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 Im getting there.

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

With love, Erika
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Old 02-14-2015, 04:00 PM   #13
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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.
trying to be New Skinny Butt
You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
"DESIDERATA" by Max Ehrmann
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Old 02-14-2015, 08:18 PM   #14
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Yes, thank you all. I have been in tears and some laughter here.
I am re-reading them all.
~Love, Sally

"The best way out is always through". Robert Frost

~If The World Didn't Suck, We Would All Fall Off~
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Old 02-14-2015, 08:49 PM   #15
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Thanks for the read.

Last edited by Lumia_black; 02-14-2015 at 11:04 PM. Reason: Decided to add my story
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Old 02-14-2015, 10:24 PM   #16
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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

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Old 02-15-2015, 06:35 AM   #17
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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
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Old 02-16-2015, 05:46 PM   #18
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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!
I cannot control my illness, But I can control my wellness.
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Old 02-16-2015, 08:48 PM   #19
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Originally Posted by BBS1951 View Post
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!

You said you had some slight symptoms from about your 20's right? So you had it before 47 right?

I was 25 when it hit me. I don't remember too much on any slight symptoms any earlier. I did get some weird sensations, but nothing I felt bad about. It was 25 when I started to feel something was not right.
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Old 02-16-2015, 09:35 PM   #20
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What wonderful, inspiring, and heartbreaking stories you all have shared. Thank you to all of you who have shared your stories.

Back in 2002/2003 I had the worst rib cage pain. I had no idea what it was. I went to my PCP and he ran some blood tests and X-rays. All tests were negative and the pain eventually subsided. The pain returned again and I saw him one day while working at the hospital. He could see that I was still hurting and actually asked me about it and how I was doing. I told him it was back but since we couldn't identify what was going on I was just working through it. He said I was too young to have that kind of pain without a reason and asked me to make an appointment to see him. I did and he ordered an EGD to see if the pain was from my stomach. The EGD was normal with the exception that the nerves in my stomach were extremely sensitive. He then felt it may be autonomic neuropathy or something with my CNS and ordered an MRI. The MRI showed some lesions and he referred me to a neurologist. I saw her and at the time I had no clinical symptoms that suggested anything neurological going on. She explained that the lesions could be from old injuries, migraines, and/or a virus of some sort. I went on my way and just dealt with things for the next few years.

In the fall of 2005, I lost the feeling in my leg and it went numb with tingling. I lost my sense of balance as well. I went back to the neurologist who did another MRI which only showed 1 more lesion. She determined I probably had CIS MS. New Year's Eve 2005, in addition to the rib cage, more balance issues (wall walking/drunk walking), and leg numbness, I lost control of my bladder as well as some vision problems. I went back to the neurologist who then diagnosed me with definite MS. She recommended Copaxone and I started on that a month or so later. She ordered another MRI which showed a couple more lesions and a thoracic lesion.

It was kind of a scary time as I was a single mom who now could not work. I could barely walk and didn't drive as my car had a manual transmission. It was scary to think of how I was going to support all three of us. I decided to apply for SSDI that May as it did not look like I was going to be going back to work again. It took me about a year to learn to walk again as I was constantly falling, especially when I made left hand turns. The neurolgist told me it would take about that long and she was right.

Being diagnosed was actually a blessing in disguise as DD's were both in high school (DD23 a freshman and DD24 a sophmore). I was able to stay home with them during that time and I think it benefitted all of us. I was granted SSDI and worked a little from home. Things were tight but we made it.

That's a brief version of my story.
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