Is This Really Happening?

That about sums up how I feel about this whole thing. I try not to think about it. It's easier to get through the day if I don't. I'm clearly in denial and it's been almost 3 months since the diagnosis of MS was given to me. I'm 30, full of life, competitive, hard-working and up until the summer of last year when I began to have quite a serious attack, I was moving forward at such a rapid speed. Now it feels as though my whole life has been whiplashed. I know a lot of this is mental because when I look in the mirror, I look the same, I just don't feel it. It really changes things. I live alone but close enough to my parents that I can see them regularly. The best part about my situation is that my mom has this too, and has helped me get through so many obstacles and found me the greatest doctor who treats only MS, whose own mother has this too. He has compassion and truly cares. I'm so lucky he's my doc. Anyhow, he and I went through my MRI's and did a lot of tests. Apparently my optic nerves look great and in general I am in good health. But there is a large spot on my neck which is accounting for all of my issues. I have like a line of numbness on my inner right leg stemming from my ankle all the way up to my inner thigh. It's rather annoying, but not painful. It feels so strange wearing jeans or jogging pants or anything because that's when I can tell it's really quite numb, is when something is rubbing up against it. There is also this sort of charliehorse-like feeling above my right knee that sometimes feels dull, and sometimes feels sharp, but it's always there reminding me that this is real. I can walk just fine, thank God. Before I went in for a round of steroid IV's for 3 days, I was limping quite badly. I could not run, jog or climb stairs it was just so bad. It was like there were weights inside my legs. I couldn't believe what was happening to me. I thought perhaps there was a bloodclot, but it was also subtly in the other leg too. So one thing led to another, I was tested and I was diagnosed. I know I should be in the gym to rebuild some strength in my lower body, which was always strong, but I'm so afraid I will get back to the point where I'm having trouble getting around again. I am going to start rebiff on Saturday, but I was also told that I was approved for a trial study of newly diagnosed patients who have never tried treatment before, and the light at the end of the tunnel is a year's worth of gilenya, maybe two. It's such wonderful reassuring news, and it's free. I would love to steer anyone who lives in the Las Vegas area in that direction. I would just like to talk to people about this too. I'm tough, but I have feelings as well. After all, we're only human. It has been a long 3 months for me of mainly suffering in silence, portraying a happy facade at work, smiling, laughing, cracking jokes...a complete illusion. I'd like to get back to my old social self and I suppose this would be a great avenue of doing so. I am going to give the support group thing a try too, first week of Feb. Any feedback or positive messages would be great. Thanks for reading.
ComnSense30 ComnSense30
26-30, M
4 Responses Jan 17, 2013

accept the reality and dont be obssessed It is what it is and it sucks

Hmm. That is definitely something to chew on! Thanks and I will keep it on my radar. I am willing to try anything new if it will have favorable results. I have been feeling very good lately as a whole and hope this continues for me. Hope you are well as well!

Let me tell you something. There is evidence that at least some MS cases may be as a result of a reaction to gluten. It's on a continuum with celiac disease. The late Dr. Robert Atkins was able to turn MS on, and turn it off, by introducing and then withdrawing gluten. So you should eliminate ALL grain products from your diet. No bread, no cereal, no pizza (the crust) no rolls, no bagels, no cake, NOTHING. And to start with, that means all grains, not just wheat.
If your doctor pooh-poohs this, then you need to get another doctor. It's very easy to put down something that we're not "up" on. Most doctors are completely ignorant of nutritional and dietary treatments because they don't get much of that in medical school. They'll be very happy to prescribe medications for you, but the medications mostly treat the symptoms without getting to the root cause (like turning off a fire alarm because it bothers you, but not putting out the fire). The medications all -- ALL -- have deleterious side effects. And the drug companies reward doctors for prescribing them.
This approach has zero side effects. It's certainly worth a shot, particularly at your young age. Good luck!

These are answers to a questionairre I just did regarding MS, and I put a lot of thought into it. It pretty much covers everything I've been feeling. In short, I think I've been too quiet about this for 3 months. Afraid to discuss it too much at work for fear of being ostricized. Afraid to talk about it with friends or family in fear of judgment or labeled a complainer. It's just very tough to deal with this all. So I'm unloading some of it off my chest and I thank anyone in advance for taking their time to read it. Thank you.

Hmm...I'm kind of an extreme person, that is to say that I can be extremely ambitiously or just the opposite, a lazy bum lol. But up until my diagnosis (10-31-12) I was more ambitious than ever, had just finished college and planning for the future. Upbeat, sometimes moody, it comes from having a type A personality and used to stress. But now that stress is to be avoided at all costs, my personality has changed a bit. More docile, even withdrawn a little, humble I suppose but not myself. It's good and bad all at the same time.

2) Around the Fourth of July, I was visiting friends/family in my hometown of Buffalo, NY when I to feel this incredible weakness in my lower body. I was having trouble climbing my buddy's stairs. I was even having these like really weird sensations that felt like out of body experiences. In essence, I felt intoxicated, even though I wasn't. Dizzy. Just strange. When I returned to Vegas, the numbness began on my inner thighs and a charliehorse like feeling that remains to this day. It has improved, but it's always there. Earlier in the year, I was having cluster headaches. Just a brutal, every day occurrence that really made graduating college so so much harder. But I got through it with sheer will power. I also had a tingling sensation in my neck and when I would bend my head forward, my lower abdomen would go numb. But that along with the
headaches have disappeared. I'm hoping the numbness and charliehorse feeling in my quad muscle will soon follow suit. I could really use a break.

3) I was scared of the diagnosis, cried in my mother's arms, which I have never done before, and then remained in a state of denial which holds true even now. I go about my day almost never thinking about this. That is until somebody asks me how I'm feeling, or the rebiff medication arrived to my apartment yesterday night. It brings a small sense of panic over me which makes me think I'm slightly in denial. I don't get defensive anymore, but occasionally feel a little nervous or panicky when I get reminders that I have this. It's a mental thing. I'm trying to fight the sociology of the disease. I'm too proud to play the role of a person who is sick at this point in my life. I'm just not ready to accept that role.

4) I plan to keep moving forward and remain ambitious and work hard, because I find that the harder I work, the luckier I get. I got some great news today and a possible new and exciting career prospect came my way today. I think I will always remain somewhat in denial, because that just seems like the best and easiest coping skill I can come up with that simultaneously enables me to maintain my self-identity, the one I had before I knew I had MS.

I always wonder why denial gets such a bad rap. It,s a coping skill that served me well for many years, until it didn't. But that's my story. You are young, and lucky that there are now a number of choices as far as how to manage this disease from a medical standpoint. I know I felt almost guilty telling my mom about my diagnosis. I felt like I failed in some way. I was supposed to take care care of her, not vis versa. I was supposed to be the strong one. But I had no choice letting her in- I needed her. I would not have been able to raise my two girls without her. My husband just didn't get girls, so having gramma play Barbie was a big help to him as well. So you are lucky to have a mom who can help you when you feel weak. You have plenty of time to adjust to things. I believe that you will grow and thrive, despite of and maybe because of ms. Good luck and prayers.