Did you know other people living with MS... - My MSAA Community
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My sister in-law who was diagnosed in the early 80s with MS when she was about 25 , has been telling my wife and I that I had MS because of my symptoms, since right after she was diagnosed. I was officially diagnosed by a Dr. in 2008.
It's Fancy1959,
Through events such as MS walks, educational series organized by my neurologist's office, and MS dinners put on by various pharmaceutical companies I have met dozens and dozens of people who live with MS on a daily basis. Connecting with them has certainly broadened my MS knowledge especially at the pharmaceutical reps dinners. They tend to be extremely educational as they have experts speakers, like different neurologists, come in and speak on different subjects. I would encourage anyone who possibly can to attend seminars put on by pharmaceutical companies. They are usually held at nice restaurant and you get a free delicious meal while listening to the educational seminar.. So what more could you ask lots of information and free dinner. Plus meeting other people affected by MS that live in your area. Oh and usually you can drag your spouse along to help educate him or her as well too. It's a win-win situation for all involved.
My dad had ms 31 yrs ago. How ironic is it that he was in one of the first studies for interferon, and 31 yrs later his daughter is taking the same drug😁
A good friend from childhood's mom had MS and she passed away very young. Definitely made me scared of MS as a very young age. Good friend in college's mom has MS. 6 years ago my identical twin sister was diagnosed. I was diagnosed in May. Apparently I also have a Great Uncle with MS as well.
Sarah Ann, while it's very unusual for MS to run in families, being born in the same geographical area, being exposed to the same "air" and toxins, MAY all contribute to what seems to be a trend in your family. Regardless, I'm hoping your familial-connection has given you a realistic outlook of your options, mind-set, and most of all, the abilities you will always posses, MS or not! Have faith in your Dr., take copious notes at appointments with your Dr., and bring someone with you to appointments ~ I know that I only hear part of what is said to me during an appointment, ANY appointment!
Best of luck to you and may God Bless,
Bea
Thanks for the reply. My sister and I are identical mirror twins... meaning the egg split a little late, after it started coding left from right. We were also premies so I sometimes wonder if that plays a part into all this even though there is no proof. Being diagnosed with MS was not a surprise for me... I was diagnosed with Grave's Disease (autoimmune thyroid disease) in high school and then 3 years later my sister ended up showing symptoms. So being she had been diagnosed with MS, it wasn't a surprise for me when the symptoms started... it was more of a surprise that it was 6 years after her diagnosis. But being I didn't have outward symptoms, I hadn't been tested and now I have quite a few more lesions than she does. My specialist is pretty upset that my sisters previous neurologist told me not to get tests done until I had symptoms. My sister hasn't had a relapse since she was diagnosed, so hopefully I follow the same pattern. But we will see. She has tried most of the drugs out there without success. I just started Tysabri being she hadn't tried it ... and of course on my second dose a few days ago, I had an allergic reaction so now I am going through antibody testing and will probably have to switch to another medication... we will see what happens.... Luckily my twin has went through all this already so I have someone to talk to about this. Also glad we live in the same city for the first time in a few years. Definitely makes it easier.
Sarah Ann, it's great having your sister to bounce things off of. I often compared having MS and not having anyone to talk with about it, to being the mother of a two-year-old, living on a hilltop and not being around any other two-year-old, wondering, "Why is this child bouncing off the walls?" I started going to MS Self-Help meetings weekly (not much internet in 1989 when I was dx'd !) and still have members of that group that I speak with. It's not exactly a unique organization! If your sister's experience with the DMT's was unsatisfactory, what does she attribute her not having a relapse since dx? Just curious. Sorry your experience with Tysabri was negative, as well. As I have primary progressive MS, there isn't much available for me. Not concerned, after 32 years since my first symptoms (leg spasticity) and being told it was PPMS, I'm comfortable being in my power wheellchair and using my desk computer! I've been told I have "diarrhea of the fingers"! Curious - where do you live? I'm in Central California, where it's hot (6 p.m. and 89 degrees, it'll still be high 70s at 11 p.m.). Heat not good for MSers. In the summer I'm a boneless chicken, winter I'm a wooden soldier.
Best, Bea
Hi Bea!
I am glad you were able to find a great support group. My sister is a great support for MS. I am still pretty new into everything so I am not sure about all the different types of MS. My neurologist never even told me which type I have. We never had that conversation so I am assuming I have RRMS.
We aren't sure why she hasn't relapsed since being diagnosed. The first couple of years she tried quite a few different meds but realized they made her few more sick than not taking any. Her MRIs haven't shown any progression so we are baffled. She only has 2 lesions right now. When she was diagnosed they said she had more small ones but I guess they shrunk with the first medication she was on. But she felt awful. She has very thin skin and has had varicose veins her whole life so injections keep her bruised for a really long time. Once she accidentally hit a blood vessel and it hurt so bad and took forever to heal that she was scared to try that med again.
We grew up in Michigan but my sister relocated to Phoenix 3 years ago and I came out here a year ago. The winters are great but the summers are really hot. Because of everything that happened with my job and losing insurance it took a while to get on meds, so I have been hiding out in my apartment 90 % of the time for months. Luckily the temperature is finally down in the 80s and low 90s. Luckily my sister is a teacher so she is able to go back to Michigan for a month in the summer and that helps her a lot.
I don't understand why my sister had the relapse at 22 and not since. When we look at our medical history we see things that were unexplained in high school but now neurologists believe were symptoms. Mine happened around the time I had another autoimmune disease (Graves disease) so it was attributed to that. For months i couldn't see in the dark and saw different shades of color between my eyes. We are just waiting for a trigger to happen that will make things speed up now that we are 29.
Best, Sarah
Hi, Sarah, sorry it takes me days to answer, but I don't get on the 'puter daily. Wow, 29 ~ I was 47 when dx'd., five years after first symptoms, so PPMS is typical when being dx'd. after age 40. Sorry to hear of your sis' skin issues. I'm fortunate I still have skin integrity, although at 74+ it's something for me to be aware of. Not having a relapse for seven years and the lesions seeming to disappear is great news! Do you both go to the same neuro? Are you seeking employment or is that a problem for you? I worked for 32 years, starting as a Typist, ending up an Executive Secretary, and loved every minute of it. Quit working when I was 50 because me husband was a V.P. of a manufacturing co., then he walked out on me a year later. At the time, I wished I was still working. Hard to think that was 24 years ago, and you were five! Funny, huh? Everything is relative, one of my "mottoes"! Are you on any DMTs? How frightening your symptoms with Graves disease were! Although all our senses are vital, to me vision is most important as photography is something I can do if I'm in a power chair or on two feet. As it is, I take numerous pills for symptom management: for spasticity I'm on baclofen, tizanadine, and lorazapam; for pain, neurontin and meloxicam. I also take meds to increase my blood pressure (most people have to take lowering meds), and pills to lower my cholesterol. Breakfast is a handful of pills!
Sarah, enjoy the cooler weather, and try not to "listen" for the other shoe to drop. I'm sure that will be difficult, which is why I'm grateful for PPMS, as the other shoe dropped years ago. Trying to keep a light tone to a serious disease. I've never felt I'm sick, but that I have a disease that I got through no fault of my own. Oops, I'm rambling, again, so I'll close.
Take care, Bea
