Thanks for all the Welcome posts I received! I am from Louisiana, the little boot state that has a festival for every food/crop we produce! Cajun/Creole Country! Our spices we use are as hot as our weather!
I am having a difficult time with completely accepting that I have this disease. I was diagnosed on July 24, 2014, a month shy of my 49th birthday. Went back to work and put together a binder. The front cover read, I have MS but MS does not have me! That was my motto. I continued 2 work and lived my life ignoring symptoms. After all, I had been a former athlete who was still very athletic. I have a tennis player, a football player and a volleyball/ track star. I had things to do and I wanted to be involved in every event of my twins life. So, I never slowed down. I went to football games on crutches, driving myself, driving my daughter to Birmingham,Alabama, Starksville, MS and Nacitoches, LA to participate in travel VB and VB camps. I refused to let this thief change my life! So from July 14 and all of 2015, I just kept living; went 2 Jamaica for my 50th birthday, on and on. I am going to beat this!
However, in 2016, I started falling more and becoming more fatigued. Literally worn out. I could not quit now, my twins are Sr's in high school. I had 2 see a MS specialist that my oldest son found for me through the LSU system. I went from Relapsing to Progressive. Wow! I could not grieve, my twins will graduate in May. So, I went 2 therapy, took my treatments and kept pushing.
My husband works overseas. We have been married for 29 yrs,dated for 5 prior to that and he has always worked away. My kids were born into that life, but understood this is how Daddy provides. I worked outside the home as well except from 2010-June, 2013. In Sept, 2015, I had to resign.
So, I did it all. I had to. I multi-task, supervised subordinates, reared my kids, went to events, etc. I lived by the rules, for the most part, I chose to do the right things and made sure my kids did as well. So, how does an athletic Mom who never quits end up with PPMS? I get angry at times, can no longer be in denial because I am now walking with a walker.
I miss playing sports with my children who are now 25 and 19. I miss dancing with my husband, walking/running the track in the park, networking with co-workers. I especially miss dressing up for work and wearing my high heels! Dancing was my favorite hobby! I could still remember my high school routines when I was a cheerleader, I could still do a split before the thief came in and robbed me of my life!
Now, I color in adult coloring books, read, live on the computer searching for anything that can help me get better. So now I am looking at Stem Cell therapy (so costly), Lemtrada, and waiting for the new drug to be approved. I was on Tysabri. However, was never comfortable because of risk of PML. I am sorry if I sound like I am complaining but I needed to vent.
I know there is so much to be thankful for despite MS. Everyday I wake up is a blessing! My daughter is in college, playing sports and doing well academically. Her twin brother has been home helping me, but will be leaving in August to attend college. My eldest is 3 months from becoming a Dentist. He reminds me all the time that I could have been diagnosed when they were all little, and everything would have been completely different.
I have love ones, good friends and now my MS support system! MS is not bigger nor greater than God! So, I am grateful!
For those with PPMS, please share experiences, give advice if you used or if using any of the above mentioned therapies. Thanks so much!
Written by
lexsarset
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lexsarset , it's wonderful what you have accomplished already in your life. You have so much to show for your efforts.
I can only imagine how you must feel going into SPMS, but you will find many here who are at the same stage. I was recently dx'd with RRMS and am 57. I dearly loved ballroom dancing, but know I probably will never have the chance again. I think even when we are at our best in terms of dealing with our diagnoses, we still struggle with the acceptance of it and all the changes it has caused for us.
For me, my faith in God has sustained me, and it appears that it is doing the same for you.
I think you will find a place of refuge here with numerous friends who share their triumphs and challenges, share information, and who support one another.
Well it's 6.30 am here in the uk, why aren't you guys in bed sleeping? I have PPMS, I don't take anything. I was dx in October 2010, I too have 3 very successful children, my life echo,s yours in regards to activities and parenthood. Now I have a walking stick called Gravity, a 3 wheeled bike called Freedom 1, and a purple Walker, that my grandson as yet to name. Erash has a bike called Freedom 2. Ms is like owning a dog. You only let it tie you down as much as you want it too. Remember there are no lesions on your soul, blessings Jimeka
I hope l didn't come off coming cold lexsarset because I would never mean too! I think of all of what we have done, and overcome has made us all just so much stronger. Strong enough to handle this.
I had a very messy divorce and then l was a single mom with 3 Beautiful Angel Monsters. In elementary school. Then 2 back surgeries with in a yr of each other. And having to leave a job l was Awesome at! Doing it alone for awhile then not, then again. Lol long story ☺ But it Makes Us Who We Are! It Makes It Who You Are!
Hi, not at all. I understood where you were coming from and it is the truth. I heard a true story of a friend's step son who is 21yr old now starting all over. At 19, he was in college, full scholarship, etc. Went to spring bring and was riding a motorcycle and was hit head on. His life changed forever, he has round the clock care, learning to walk again, etc. His girlfriend moved on. So, you are right. It does not matter who or what we are. Life happens.
Good morning, lexsarset , and welcome. You've had quite a full and active life so far. I can appreciate your anger and frustration at what this disease has taken away.
I was diagnosed at age 47, on my birthday, no less. A few months previously, I'd staggered across the stage to get my diploma which I'd put off to raise my family. Within two years I had to quit driving, and I've been in a wheelchair since 2010. However, I know I had the disease for at least a decade earlier, probably much longer than that. I had a family to raise ... I didn't have time, or the extra money, to run to the doctor with those random odd feelings etc. They always went away, anyway.
I've been on Gilenya for five and a half years, with no relapses. My neurologist reclassified me as SPMS a year ago, but I don't feel any different. She says IF I have another relapse, we'll considered moving to Lemtrada. Right now, my primary focus is maintaining and building up my strength and overall health.
We all do as much as we can to keep from letting this disease get the better of us. It's ok to vent. This is a safe place to do it.
Hello lexsarset , I was diagnosed with PPMS in May 2015. My neurologist had me try Rebif. After 10 weeks my blood work was checked and it was not good, I had shown no improvement, no changes in my MRI, and so I stopped taking the drug and have taken nothing since. (I DID drop 10 pounds in those 10 weeks!) I too, like so many , am waiting to see if the new drug gets approved. I love Jimeka's quote, there are no lesions on our souls. Let's keep the faith and hope that new treatments are found soon!
Noticed you were from Louisiana, I live in Arkansas now but lived in Louisiana for years. Columbia, DeRidder and Jennings. I loved Louisiana, a very different state!
I am 64 and I found out I had RrMS last March. I haven't had a MRI in a while. I have quickly gone to a walker also and when I am tired even that is difficult
I think it is possible that I have not gotten better. I am on Copaxone and it's the only thing I've ever taken, I see a doctor in Monroe , La.
I'm sorry you are having these problems but I'm sure your children understand But even that understanding doesn't help the loss you feel.
It is so difficult to give up things.and going and doing.
Anytime you want to vent, rage or cry, we will all understand and hopefully make it alittle better to know you are not alone.
Thanks Angie, I love Little Rock, Arkansas. Are you living there? Love the mountains! I take Ampyra to assist me with walking. I was beyond Copaxone and needed something stronger. However, I am trying to decide if I will use Lemtrada. My sons are ok with it. However, my daughter thinks if I push harder in PT, I should get better. I told her this is not a torn ACL or miniscus, this is not an athletic injury, this is a disease that presents itself differently in every one it attacks.
Lexsarset, I live in Lake Village. Arkansas. It is about 1 1/2 hr from Little Rock. What physician do you see in Little Rock? I will probably change to there if I have to leave the one in Monroe. He's 70 but a very young 70 and in much better shape tha me!
I got a script for ampyra but waiting on dr office and they are in no hurry to do paperwork. Do you think it helps?
No I don't think PT helps us much. I do notice that the diet changes do but it is very hard to stay with that when it's so easy to eat junk or fast food. I've been to rehab 2-3 diffent starts and stops. I hate it and I have so many other problems it aggravates back, knees etc.
I really think I may have moved from RRMS as I have gone from walking with cane to mostly walker in 18 months or less. I also am having much more weakness in hands. Walker is hard for me to use much, I have cramps in right arm and that is my strong side. My left leg has bad drop foot and left arm very weak Now I am having problem with right arm . Sucks.....
Do you still drive? I do and since it's mostly left side for now I am ok.
I have lots of pain. All pain pills tried make me itch until I scratch and bleed. My pain dr changed me to fentenal patches and it's wonderful how much pain is reduced without the itching and the yuck feeling.
My doctor said I only had 2 lesions (last year) one on c2 spine and 1 in left brain. However, I am much worse since then and I think I will have more this time around.
I visited Arkansas for Tennis tournaments. There is a young MS specialist in Alexandria. He is very good. My younger cousin is his patient. I see a MS specialist in New Orleans and in Houston, depending where I am for the month. Received some disappointing news today. My Nola doctor called with recent results from MRI. total of 6 new lesions, which explained why my other leg was affected. So we are back to the drawing board. I am remaining positive and I have my faith.
Hate to hear about your new lesions. I know that is upsetting. Do you live in NOLA? I love going there, but that might be something I may not be able to do again, since the fun is walking!
will you not start the Lemetra now? I don't really know much about that drug?
My younger daughter goes to college in Lake Charles in pre vet. She went to high school in Crowley. I don't know where she will go to vet school, I think she will apply next semester. I loved living in Louisiana and I miss it!
I most likely will begin Lemtrada, Dr. and I spoke briefly about it today. I was given some instructions to get done. He is going on vacation for a week. Of course, it is Mardi Gras season and Fat Tuesday is next week. My eldest attends Dental School in Nola. I used to go every other weekend when I was in College and our job hosted a big conference every yr. Yes, it is fun to walk the River walk, French Quarter, etc. It is a lot of walking though. So, now we can be pushed in a wheelchair!!! LoL, It will be a lot of fun! I am going on there in three weeks, walker, wheelchair and all!
Have fun in Nola !!! Let me know how you do!!I have a wheelchair too just need a pusher!
My daughter wrote tonight that she is out of school and coming here while on break. I told her if she wanted to board her critters that I would pay! She hasn't written me back so I guess that means she bringing them!
Letme know what doctor says when you see again and how you do on new meds.
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Thankful for my MS peeps.
Primary progressive M.S.
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Was DXED with PPMS
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