Two little letters
 

All it took was hearing two little letters from the doctor to alter my entire reality. To suck any hope I had left in me completely away. Hope that I could get better, hope that this pain would some day go away, hope that I could get back to my 5 mile a day run, hope that I would take that afro-cuban dance class I always wanted to, hope that I could get back to making dinner for my family, hope that I would run barefoot in the sand with my son showing him how I trained for track when I was in school, hope that there might be a second baby grown in my womb. Two little letters and my life and dreams have been completely shattered.

dear kerOpi,
i assume you mean MS. i don't know your situation but i want to tell you that MS is not a death sentence. no one, not even completely healthy people, can predict the future.

MS is very different for each individual. yes, some don't do well. but most do.
i was dx'd 11 yrs ago. my neuro thought i'd be in a wheelchair in 5 yrs. well, i'm not. i do walk with a cane and i'm slow. but i walk. i drive, i'm independent and live in my own house.

i'm saying you'll be able to do everything you used to. it just won't be the same. i had to learn to make adjustments. but making them helped me con't to live a fulfilling life. i have many friends.

i did have to give up my nursing job/career. i've got ssdi. life is adjusting.
i learned to be more gentle with myself, and i learned patience. boy, did i need that.

it's normal for you to grieve for the losses real and perceived in your life. it's so sad. please stay with us and we can listen to you and talk about it. offer support from folks who have been where you are now.

glad to meet you. glad you're here.

i messed up a sentence...i'm NOT saying you'll be able to do all you used to...

Welcome Keropi, to the club, you never wanted to be a member of.:rolleyes:
Nice to meet you. Tell us a bit about yourself..:hug:

Hi kerOpi
 

I am sorry you have MS. My cousin has it too. I think she was in her 30's. Now 62, she has enjoyed a really good life. Remissions happen kerOpi. In my opinion no doctor should take away a persons hope. He doesn't know your future. There will be people on Neuro Talk to help you. The MS forum is very large. Folks will respond to you, and lots of therapies are talked about. My cousin had times in her life where medicine was needed, but she also had times where no medication was needed. I hope you find another doctor, that would treat the "whole" person. ginnie:grouphug::hug:

Yes as I would guess most of us were, I was also horrified when I heard those two letters.

I was terrified that I would be bedridden by the end of the month. Truth is, and I know I'm lucky and not everyone is this lucky, after 10 years I'm still able to work like a dog and run a 10 minute mile. Not too impressive but at nearly 50yo with MS not too shabby either.

The best advice I can offer is to hope for the best but prepare for the worst. Make plans now that will serve you well later if needed. Best to you. :hug:

kerOpi,

Please heed the advice of those who have responded. They are right on. A diagnosis of MS does not mean that one stops doing things and lets this stupid disease run their life.

I was diagnosed at 17 and have had many relapses and many remissions through the years. Yet, in that time, I traveled, got 2 degrees in college, continued to study (still do), started and maintained a business, worked full time, volunteered, participated in sports, (trained and rode horses competitively, ran marathons, went skiing, played tennis, swam), farmed, married; and most of all, learned how to love and also how to love my life, no matter what the body was doing.

Oh sure, I can whine with the best of them, but there is a sense of joy in being able to do that among friends who understand. I come here for that and also to share info, to support others who are going through a rough patch and to just share companionship. The folks here are the best :hug:.

Even now, with the many challenges my body and mind face, MS does not rule my life. It doesn't have to rule yours either. Yes, it can be a challenge to have MS as a part of life, but many of those challenges can become opportunities.
For me it has opened the door to study & research, to both experiencing and extending understanding & compassion....and most of all, to celebrating achieving goals (mine and those of others), no matter how insignificant they may seem to someone else.

Embrace what you love & what brings you joy in life. Emphasize those and try to bring what ever challenges you face into alignment with them.

With love, Erika

I don't think I will have many remissions
 

I was diagnosed December 2nd last year, so it's been a little over a month. After the dx and some soul searching I realized I've been battling attacks since I was 9 years old, but I had parents who assumed I was being a brat and just didn't want to do things when I was nearly paralyzed because I got better after a day or two. I can remember about 5 very distinctive episodes prior to turning 22. At 22 I started having severe chronic neck pain that would not go away, I had had 2 severe car accidents in 2 years and a domestic violence situation. All three had done series damage to the soft tissue in my neck and I assumed it would just be that way for the rest of my life, never sought medical attention because I could live with it and my parents had taught me just to tough it out. I lived a full life running, hiking, college and on to a career. At 27 my husband and I decided to have a child. It was the best time of my life! When most women I met were complaining and miserable I never felt better. Pregnancy was the best I've ever felt in my life. I use to sit there and wonder if this was how people in general felt everyday. I felt I could do anything, take on the world and my neck pain was gone. By the time my son was 18 months old the back pain started. Chronic burning with what seemed to be abdominal wall failures. After a bad spasm I would look 6 months pregnant again. I was exhausted all the time, having memory problems, I had to write grocery lists for the first time in my life. By the time my son was 2 1/2 I started having foot dragging, I had to stop wearing flip flops and I started to see a chiropractor. I had been talking to my GP about all my symptoms but he was convinced it was all new mom stuff, lack of sleep, being unhappy about my body and never took me seriously. I was working part time so I did not have health insurance. By the time my son turned 4 I couldn't stand for more than 10 minutes without my abs failing and my legs threatening to give out. I went back to work full time so I could get health insurance and finally find out what was wrong with me. By that point I had constantly burning sinuses, vertigo, walked into the door frame of every door I walked through and had a very large problem with the speech center in my brain. I couldn't remember the names of objects and would say the wrong words. I couldn't remember a conversation I had with my husband 20 minutes after we had it and I lived in a constant brain fog. I had zero energy and was falling asleep and my desk. My GP ran a multitude of tests and found everything was normal. He mentioned MS and said we could do an MRI for whatever good it would do you to know that you have it, there isn't much they can do about it. He ultimately diagnosed me with depression, wanted to prescribe me anit-depressants and gave me a referral to a counselor. He really did think it was all a psychosis of some sort. I don't see him any more. I left that appointment angry as hell, refused the prescription and the referral, called my chiropractor and asked for a referral to physical therapy. I spent 4 months in PT. When I finally stopped going I was in more pain than when I started and my walking got much, much worse. I was now falling asleep at my desk at work and before dinner every night when I got home. A dear, dear friend asked me if I had ever considered Gluten as a possible cause to my symptoms. Reading up about Celiac disease and Non-Celiac Gluten Intolerance was incredible, I had so many of those symptoms. So my husband decided we should try it. After 4 days on the GF diet my back pain reduced by 80%, my night time calf cramps lessened and I wasn't falling asleep at work. 4 months after that my son started getting nose bleeds everyday at school after lunch. His doctor said he was severely allergic to something and asked what was different in our home. I told him about our GF diet at home, but my son ate gluten at school. Doctor said take him completely off gluten he is also NCGI. He hasn't had a nose bleed since, except for the two times he unknowingly ingested gluten. He has had improvements in so many areas and grew 4 inches in th first two months. About 6 months into GF diet I felt great, 90% of my symptoms had gone away but I still had a great deal of difficulty walking and my calf cramps were still constant and waking me up 4-6 times a night. I went to a new GP who ordered an MRI, that was December 2012. The radiologist read the MRI as completely normal. My new GP sent me to PT again where I showed great improvements. I was steadily gaining stamina and muscle tone and was feeling really good. Still couldn't make dinner easily but I could wash dishes and for the first time in years I could fold laundry. My husband needed to have a hernia repair and had been holding off for nearly a year until we paid off my medical bills and with the MRI coming back negative we decided to put me off for a year especially since I was steadily getting better on the GF diet. My husband was able to get his surgery, they discovered he had sleep apnea, so there were sleep studies and then a CPAP machine. By then we had maxed out his Out-of-Pocket for the year so he went to every doctor we could think of and received medical care and treatment for all the issues he had been putting off. By October 2013 we had paid my husband's medical debt and decided it was time to get back to me. I had peaked out my recovery on the GF diet around August 2013 and my hands and shoulders had started to show signs of no longer functioning. I would have days where I couldn't type or write. I finally saw a neurologist December 2nd 2013. He completely broke with protocol and stated 5 mins in to the appointment "You have MS." I kept on talking abut my symptom progression and he said "But, you knew that already didn't you?" I told him I had been fairly certain for a few months but I didn't understand how my MRI was clear. He said, quite heated and irritated "It isn't." We finished our exam and then he took me to the office and showed me my MRI from a year ago and showed me 9 lesions. He has no idea how the radiologist cleared my MRI. I am scheduled for a follow up MRI and an LP next week, I will also have the blood test to see if I can do the tysabri infusions. I am on week 4 of Amprya and it is helping a lot but after my episode of paralysis at Thanksgiving I have not recovered much. Yesterday was rough, first time my husband had to feed me, or rather he asked if I would set my pride aside for the night and let him feed me after watching my struggle so badly. I have walked with a cane for over a year and will be moving to ankle braces and full arm crutches next month. I will also be getting my own CPAP. So yeah, I'm a little out of hope right now. And need to figure out just what the future looks like. After typing that novel I am now two finger typing because my hands aren't working, so that's enough for now.

Boy I sure wish I could read that last post of yours. Please, when you have so much to say, please break it up into small paragraphs. Some of us can't read big long readings like that. It gets all jumbled up, like it did for me. My story, from your initial post, I was dx at 20yrs with two small daughters at home.

A year later I was blessed with a beautiful baby boy. Yes, I had a child after an MS dx. I had relapses thru the years but nothing that kept me down. When the kids were grown and had moved out of the house, that's when I had 2 relapses really close together. I had been dx for 19 yrs by the time MS took my legs.

You can never predict anything with this disease. Live your life to the fullest and do what you can while you can and put MS on the back burner until you can't anymore. That's what I did. Never let it take control of your mind, like, oh no I have MS my life is over. That's the worst thing you can do. You can fight it, we all are doing in our own ways. Don't let it take your hopes and dreams. Those are yours and nothing should have so much power to take that away from you! :hug:

Hi kerOpi,

You've had some pretty unsettling experiences, what with the "normal" MRI that turned out to be abnormal, and the neuro who was so blunt, on top of your physical symptoms.

The story about the MRI should shake all of us up. It's obvious to me that mistakes can be made in interpreting MRIs--and that's the test the doctors are using as THE test when it comes to MS questions.

As others have said, your life isn't over. You'll probably need to make some adjustments here and there but I can't imagine why you think you can't have another child.

I've been reading MS forums for years and have noticed many, many people with MS who go on to have children after the diagnosis--and to raise those children successfully.

A few opt not to because they don't feel they could stand the years of extra strain, but each person has to decide that on her own and evaluate what her MS is like, bearing in mind that MS is nothing if not unpredictable.

You'll find there are many, many people with MS all around you. People I've known for many years have suddenly told me they have MS and have had it all along. It can be invisible.

--People often live to a ripe old age with MS. I've heard of one person of 97, and I've had MS for nearly 34 years now.

You've had a recent shock in learning that you have MS. Give it time.:)