Young and on pointe, oh hi MS

[SpottedCat]

I was entering my sophomore year when my older brother committed sucide. He had struggled with depression, multiple personality, and schizophrenia. My family, running, and dancing, carried me though the stress.
My sophomore year I was dx with a genetic mutation of the MTHFR sequence, and several mild food allergies. I was reduced to what my friend called "rabbit food". . But at dance I was practicing double pirouettes, and on the treadmill I clicked out the miles.

One day in class my feet felt like someone had snuck sand paper into my pointe shoes. Over a week it started to climb up my leg bringing a numbness after it, so that I could feel pressure but not pain. It reached just my knees but then receded down to my toes again where it stayed. As we went to doctors I lost significant amounts of coordination and balence (for a dancer). That spring my mom pulled me from backstage, at a recital to go to the hospital.

At the hospital I had the pleasure of a spinal tap, lots of steroids which made me very hyper (but I was still very nice I'm told), a free pair of pj's because I was in the children's ward, and 'anointing of the sick' from my church twice (best part!). The whole time the Doctors told me how weird I was. All my lesions were in my subconscious, excepting one in the middle of my back causing the numbness and although I had fallen once before my brother died, I showed no other prior signs.

They put me on Techfidera and when that didn't cut it, switched to Tysabri. I still run, but no more pointe.

I am enjoying remission, but it comes with a price. No future in dance, at least one needle every 28 days, if you have a cold; I will tomorrow, and a limit to my energy, mental and emotional strain.

Because I have such minor setbacks it makes it that much harder for me to accept I'm not as resilient as healthy people. It also makes it easy for people to dismiss me as a wimp when I need help, Even When I Try to Explain and ASK FOR HELP! I find myself constantly trying to pull my self up to standards that most MS patients wouldn't dare to try, not because I feel I can do it but because people refuse to listen when I say,

Just because I'm not falling over doesn't mean I'm not living with MS!

[headrift]

MS is truly a thief. It takes not only a person's physical strength but also their emotional strength if not watched.

...anyway, welcome to the forum and perhaps even the chat. Nice to have you here.

[carriefromMI]

The first 2 years after diagnosis are the hardest. You go through all the stages of grief because you are mourning the loss of the life you thought you had in front of you. The denial, the anger, the depression, and the after you have developed a new past of the new you, you can accept. You have to learn new tolerances by fighting with yourself over and over about what you want to do, can do, have to do, shouldn't do, will do. It's a very hard adjustment period that isn't document in books very well or ever shown on TV shows. They only show the rah rah I have MS and run marathons and life is awesome! So then when you are going through this really awful adjustment period you have nothing showing you that we all felt that way.

We have all screamed at the top of our lungs, cried to sleep, hated the world, hated ourselves, hated life. Over time your new reality begins and your new history forms and then you can look back on your new history and realize...hey, I'm ok...I'm still living my life, a new life, but I'm living life. It's ok. I'm ok with myself. (And then you get another attack and those old feelings come rushing back). There's your adjustment and then there's the adjustment people around you go through. Some overreact and treat you like a baby out of pity. some ignore because it makes them feel better. The longer I've had MS the more people tend to ignore I have it which sucks when I actually need help. I still have relatives I don't see often who treat me like I'm dying. I just roll my eyes. I wish it was somewhere in between. Help me when I need it but don't treat me like a baby. Otherwise ignore it

[SpottedCat]

Thanks carriefromMI,

When I read your words, "You have to learn new tolerances by fighting with yourself over and over about what you want to do, can do, have to do, shouldn't do, will do."

I was so happy to hear that someone else gets it.

I'm out of high school now, but I'm not confident I can handle collage. (But I want to, should do it; can't I at least figure out how to drive a car, brain?!!)

My life is far from terrible, but I wish it was going somewhere you know? One starts feeling a little silly when you stare at something you want to do then glance down at yourself, and half jokingly ask, "You're okay with this, right? Not going to crap out half way, yes?"

Thanks again, Merry Christmas 😊🖖

"[a] Wonder this is the strength of cheerfulness, and it's power of endurance," Thomas Carlyle

[twain]

SpottedCat
So sorry to hear your news, but don't give up on college or anything else. Every year science is making astounding progress in fighting MS. You are young enough that you will benefit from all that progress. Maybe there will even be a cure in your lifetime.
Keep moving.

[Brad1138]

Spottedcat:

MS has been working on me for more than twenty years. It has taken a lot from me, but there is A LOT of me left.

It caused me to seriously curtail my career, but in response I decided to go to graduate school and get a degree in theology. It took me a while to finish, but I did.

You are young and have so much to look forward to. The future may be different than you planned. Still the future can be wonderful.

I encourage you to give college a try. It will open your eyes to new possibilities. Maybe it will take you 4, 5, or 6 years to finish. Learning to be flexible is a "gift" MS gives us.

[twain]

Quackwatch on Stem Cell of America

I had a similar case. Was passionately involved with soccer until one day felt the numbness travel from my toes to my knees and what felt like my belly button. Its been 4 years now, and thanks to Stem Cell of America I have been able to regain most of my motor skills. Being able to kick to soccer ball here and there.

-----

Before anyone calls Stem Cell of America, here's what Quackwatch had to say about them:

Stem Cell of America (formerly called Medra, Inc.)

The chief American commercializer of embryonic stem cell therapy is William C. Rader, M.D., a psychiatrist in Malibu, California, who used to run Rader Institute clinics that specialized in treating eating disorders. For $25,000 (wired in advance), Rader will arrange for treatment at his Mexican clinic. In the past, he has also done business under the names Mediquest Ltd., Czech Foundation, Dulcinea Institute, Ltd., and Medra, Inc. A message posted to the Yahoo StemCells group indicates that before he opened his own clinic (in 1997 in the Bahamas), Rader escorted patients to the Ukraine clinic. Like EmCell, Rader has claimed that his fetal stem cell treatment is not antigenic and has no side effects. In a 1997 document, he stated:

Because fetal cells uniquely do not have antigenicity, they can be given to anyone with no reaction, no rejection, immunusuppressive drug therapy, or any side effects whatsoever. When a patient receives fetal fresh cell therapy (usually given intravenously over a few hours. . . ), the first action of cells is to stimulate the cells already present in the recipient's system, making them more potent. Then they actually replace the recipient's immune cells and, eventually engraft, which means they actually continually grow more fetal cells, resulting in a new and stronger immune system [15].

With respect to cancer, Rader has claimed that his treatment enables chemotherapy and radiation to continue longer and virtually eliminate their side effects [15]. Medra's "Factsheet" claimed:

The fetal stem cell searches out, detects and then attempts to repair any damage or deficit discovered, as well as releases growth factors, which stimulate the body's own repair mechanisms. . . .

A partial list of diseases includes:

Alzheimer’s, Anemia, Autism, Brain damage, Cancer, Cerebral Palsy, Chronic Fatigue Syndrome, Depression, Diabetes, Diverticulitis, Epilepsy, Impotence, Immune Suppression, Leukemia, Multiple Sclerosis, Parkinson’s, Rheumatoid Arthritis, Sickle Cell Anemia, Spinal Cord Injury, Stroke, Systemic Lupus Erythematosus and Ulcerative Colitis. . . .

Rarely has a single treatment modality offered so much promise to those suffering from some of mankind's worst afflictions [16].

Rader has also claimed that by "strengthening the immune system, fetal cells offer prevention from acquiring multiple diseases, including cancer, where the fetal cells actually form an anti-cancer barrier which becomes another anti-aging factor." [13] I don't believe that. In order to substantiate such claims, thousands of people would have to be followed in a controlled trial that lasted many years. Stem cell technology has not existed long enough for any such study to have been done.

Medra, Inc.'s "Factsheet" identified Rader as medical director and "Prof. Albert Scheller, M.D., Ph.D." as "chief scientific investigator." Searching Medline, I found no publications one by either of them that are relevant to the claims they made for Medra's treatment. In 2011, Medra changed its name to Stem Cell of America and Rader's clinic was moved from the Dominican Republic to Mexico. In 2014, the Medical Board of California revokjed Rader's medical license. During the proceedings, the board concluded that many of the claims Rader had made in his book, Blocked in the U.S.A, were false [17].