New to the community but not to MS

[Bygonelines]

Hi! My name is Jacqui. I am 52 yrs old for another month. I was diagnosed with MS in 2012 but we figure I had my first episode in the late 80's. I always knew I would get MS. I mother was diagnosed in the late 70's or early 80's.

When my folks told me she had MS there was this little voice that told me I would have it too. IN the late 80's I took my mom to one of her neuro appointments. The doctor asked me to leave the room and at that time he told my mom I had MS even though he didn't have any tests to back him up (I had no insurance and couldn't afford to go to the doctor. ( I had aged out of my parents' ins). My mom chose not to tell me at that time and about a year later I started showing a lot of the same symptoms she had plus others.

Fast forward to the late 90's. I finally had insurance and wanted to have some tests run to see if I had MS like I suspected. The doctors said it was all in my head. It was not possible for me to have MS because my mom had it so no one else in the family would have it. It took till 2012 before I could get a doctor to take me seriously and do an MRI on me. Low and behold I had about 20 lesions in my brain and 4 in my spine. They also ran a boat load of tests to rule out other issues.

I was put on the daily Copaxone injects and did well for about 2 years then started having major rashes and hives from the injections.

So I switched to Tecfidera thinking that would be better. It wasn't. I was on Tecfidera for almost 2 years and the side effects of intestinal distress, upset stomach, extreme itching, and always feeling fluish I decided to stop Tecfidera. Now I am back on Copaxone but it is the 40 mg 3 daysa week uinstead of the 20 mg 7 days a week and my body is so far tolerating it well.

My biggest issues are strength on the left side of my body, Foot drop on the left when I get tired, and bladder issues.

I broke my right leg in on Halloween last year when I fell for the 3rd time that day. I exercise everyday and the strength and flexibility have not come back. I have had to resort to using a walker and a scooter to get around. On really bad days I use a wheelchair.

I look forward to talking with others here. Sorry for the long novel.

[Vlbrown57]

I understand how you feel with doctors either ignoring your symptoms or misdiagnosing your disease. You and I also share the foot drop falling and bladder issues. I take Aubagio which I have tried to tolerate but recently the itching and hives have about driven me crazy. Calling my neurologist Monday to let her know I am stopping the rx. Going to see what she says and does when I take charge of my health and life. You can always get a shoulder to cry on here so to speak. Take care.

[Ashirva in reply to Vlbrown57]

Just a thought... I was on Aubagio for a while and, when I was taken off of it, my neurologist put me on a medication that was supposed to completely remove the Aubagio from my system so that the side-effects wouldn't linger. You might want to ask your neurologist about that if you've been having problems or side effects with the Aubagio. Good luck!

Anne

[Vlbrown57 in reply to Ashirva]

Thank you for this advice. She did talk to me about that. Will definitely take the medicine if she removes me from treatment.

[jimeka]

Hi Jaqui, I am 60 years young and was told I had ms 6 years ago. I fell off my horse 14 years ago but it took 8 years for the doctors to listen. I too have foot drop on my right side, I have had my T7 and C5 discs removed and I have a brain like a furred up kettle with lesions down my spine. I live in England so the nhs look after me, but getting people to listen is a joke. I use a wheeled walker, walking stick, and I have had grab bars placed around the home. What I take is for restless leg syndrome as all the medication I took for ms gave me a severe reaction. Hope you have a better day. I also have a leg and foot support which I wear so that I can still pedal my trike, as my balance is way off so riding a 2 wheeler is not possible. Take care Jimeka

[REDLIPS44]

Jacqui I just signed up today I have had MS since 1998 I am 53 I had the Lemtrada infusion in January 2016 and will go for my 2nd one January 2017 it is believed to stop the progression of MS very much like the Stem cell but less dangerous. I do have a new lesion on my c. spine my right leg does not work, I use a rollator. But very happy to be alive, I cannot stand for more then 30 seconds thank God my rollator has a seat. I use whatever I need to. I do have a wheelchair for long distance, God bless you and good luck with everything.

Cheryl

[Ashirva]

Hi Jacqui! Welcome to the best site on the internet! Everyone here is very supportive and open to sharing, listening and helping each other. So feel free to ask us anything!

Anne

P.S. LOVE the yellow flowers! Did you take the photo?

[Bygonelines in reply to Ashirva]

No, I didn't take the picture. My husband and I had pictures taken of us and my service dog in training for Christmas last year. Our families kept bugging us for a new photo. It had only been 19 years since our last formal photos.

[Ashirva in reply to Bygonelines]

LOL! I meant the photo of the flowers! But the photo of you and your hubby is great too!