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  • About Me

    Image of Neener

    Neener

    Female, 2009, Married
    UT, USA
    Member since November 24, 2008

    • About Me

      Married to my high school sweetheart. We met when we were sophomores. He was a tan, blonde, surfer dude. I was a straight-A student who played in the orchestra. An unlikely pair eh? We dated all through high school and college. Then married and had 4 kids, twin sons, then another son, and then our youngest, a daughter. We moved from So. Cal. to Northern UT. He's a computer geek and I'm a counselor at a university. I was diagnosed with MS in February 2009. Have to change this now my doc says that a lot of this stuff is from the MS... the dystonia, drop attacks, the autonomic dysfunction, etc., but not the recurrent parotid tumors, or the weird cardiac arrhythmia, though can't blame those on MS :)

      Married to my high school sweetheart. We met when we were sophomores. He was a tan, blonde, surfer dude. I was a straight-A student who played in the orchestra. An unlikely pair eh? We dated all through high school and college. Then married and had 4 kids, twin sons, then another son, and then our youngest, a daughter. We moved from So. Cal. to Northern UT. He's a computer geek and I'm a counselor at a university. I was diagnosed with MS in February 2009. Have to change this now my doc says that

    • Interests

      Music, hiking, reading, Nintendo Wii & DS, Internet junkie

      Music, hiking, reading, Nintendo Wii & DS, Internet junkie

  • Recent Activity

    Recently:

    • 2 hugs received, 2 hugs given

    Wednesday

    • Neener gave angela56 flowers 3:53pm

      Oh I've been through some pretty scary earthquakes in California, but then I was born there and live…  

    Tuesday

    • Neener gave angela56 a ray of sunshine 6:41pm

      Hi Angela, I hope you're starting to feel a little better. We just got back from California. My mother-in-law…  

    October 27

    October 21

    • Neener gave angela56 an I'm with you 11:43am

      Thanks I know you understand. My head tilts to the right as well. I don't think mine's as bad as yours…  

    October 20

    • Neener gave angela56 a hug 6:53pm

      Hi Angela, How are you doing? Our weather is starting to get a little gloomy here. This dystonia is really…  
  • Journal

    • Dystonia weirdness

      Mood October 5, 2009 1:56pm

      Forgot to mention my latest weird symptom. My right foot has a mind of it's own. At first I thought it was just some kind of spasm, but I'm …
    • It's been a while...

      Mood October 5, 2009 1:42pm

      Gee I didn't realize it had been so long since I'd written. I had another relapse that started on the way home from our California vacation. …
    • Not again!!

      Mood July 15, 2009 3:20pm

      Talk about an anxiety attack. Monday I thought I was starting to have another relapse. I still may be, I'm holding my breath. I'm starting to …
    • Feeling almost normal for a change!

      Mood June 26, 2009 2:18pm

      Other than a few weird things here and there I actually have felt almost normal these past few weeks. It's been so nice especially with the great …
    • Tysabri?

      Mood May 22, 2009 3:50pm

      Saw my neurologist on Tuesday. I had just started to feel better on Monday. She said she was thinking of switching me to Tysabri if I was still …

    Read Journal

  • Hugbook

    Give Neener a hug



    • Flower

      From angela56 Wednesday

      Something just occured to me you have all the problems with ms, and dystonia, and then the student's come in with their problems. I don't know how you handle that.
      Sorry about the legs. I didn't sleep for nearly a year because I didn't tell the doctor my legs felt so weifd that I couldn't sleep, he gave me elavil, I know it is an antidepressent but it works, just a mild dose at bedtime.
      I know that Montery is probably one of the coolest places in CA other than the mountains. It was so great though I loved the farmer's market, they had that once a week, and you could buy almost anything. I also like a street named Candylane at Christmas it looked like a candy lane. Carmel was one of the most beautiful little towns I have ever seen, and I couldn't get over dog's eating lunch with their owners at restaurants. I saw a guy and his little yorkie at a cafe, the little dog was begging for bites of salad. Really cute.
      So sorry about your son and the marital problems. We went through that once, but My daughter worked, it out, they had a little 4 year old at the time, she is 12 now, and it was just tearing her to pieces, so grandmom cried, and cried. Had to go to the hospital once, basically just from the stress. Heck I will never figure out how to figure stress. I am a cryer, I can cry for a long time. Luckily don't do it often.
      Did you see the woman on tv that walks to NY marathon, she has ms, and has walked it for years. Takes two days. Crutches on both hands. She stops to hug the prostitutes. Bet that is unusual.
      You take care.
      Love, Angela

    • Rainbow

      From angela56 Wednesday

      I am doing okay, still back pain, and no voice, well there is kind of a voice but you wouldn't understand it. My family does pretty good.
      You went to CA, I have been to Monterey twice, we went by plane. Our son was stationed there at the time. I am fasinated by riding on a plane, just getting in the air is a miracle to me. Looking down at the jagged mountains and the flat lands
      was so much fun. I will admit that not being able to walk was a bit of a problem at times. Those guy's that get tipped for pushing a wheelchair are trying quickly to get from one person to the next, in Columbus Oh, the pilot called in advance for a wheelchair, they never brought one, so I walked up the ramp, he saw how difficult it was, and man did he yell at those people at the desk. He and a flight attendent waited with us, until we all gave up.
      I loved the Pacific so different from the Atlantic. We actually were there when a small earthquake occured it shook the trees outside, and it felt like the floors were waving. I wasn't scared, my son was in the bathroom so I walked back knocked on the door and told him we were having an earthquake, he said no kidding.
      I am glad that your mother in law is doing so well.
      I can understand your concern about changing to tysabri. I have read it works wonders, but then there are dangers, copaxone is safe. I took it for awhile. My husband gave me the injections. My hands tremor so I couldn't. I stopped because of the expense, and it wasn't helping any symptoms.
      How is your dystonia doing. it is an ugly disease, but it can go into remission I read that, I know my cervical dystonia is much better than it was when I first got sick. Now it is the spasmodic dyshonia, and the back that are bugging me. Of course the tremors are bothersome too. I would like to have the x rays explained to me. I don't really understand narrowing of the discs, I knew I had a curvature, and osteoarthritis is not unusual at my age, but I exercised every day, now afraid to.
      Oh well that is enough about me. I just wish again that we could all get well, and enjoy the rest of our lives.
      Love, Angela

    • Chicken Soup

      From angela56 October 21

      I hope you aren't having another relapse. I really haven't had relapses just a gradual worsening of the ms. Of course I have the voice problem with dystonia, I also have a lot of tremors, I have jerky little nerve problems, I describe it as popcorn popping, those hit just about everywhere. I have has spasms in my larynx, that really hurts but just for a few seconds. I have had vertigo, a few times. I hate that spinning sensation, I hate being dizzy too, but vertigo is much worse.
      I hope that you can continue to work, I know it must be very difficult. I remember when the doctor told me I had cervical dystonia, and ms. I said lucky me. That was so long ago. I really didn't know what a journey it would be. I was 38, and doing well. Until my neck started pulling to the right. I could actually walk pretty well in the beginning, but then that kind of went down hill too. I have heard that tremors are one of the most difficult things to control. I had beautiful handwriting it is gone, because of tremors. Funny the little things you miss. I haven't driven for 18 years, and at the beginning I missed that, not so much now. I can't turn my head very easily, and my reaction time is slow, so I gave up driving on my own.
      I am glad your husband has activities that he enjoys. My husband likes to listen to old records, I guess that is his main interest. He played football in high school very athletic, can't get him to exercise now though. He really needs to, but it seems like when I got sick he just stopped doing anything really physical, our 12 year old granddaughter visited during the Summer, and she kept him going. The grandkid's really give him a work out they just live to far away. I am hoping neither my children or grandchildren ever have to go through an illness like mine, I do wonder about the dystonia being hereditary but not proof of that. My kid's are very conscious of their weight. Both in very good physical condition. Our oldest granddaughter was recently diagnosed with asthma, her father has it. She dances, plays softball, and stays active. I hate it that she has asthma, but it doesn't seem to slow her down. I have 3 cousins on my father's side of the family that have lupus, and 2 second cousins on my mother's side, one with dystonia, the blepharospasm, the eye problem, and the other with ms, his ms is mild though only a couple of attacks basically with his eyes. They are both older than me. The one's with lupus are close to my age. I know there is a genetic component, but I also know that identical twins can have the same genes and one gets ms and the other doesn't. There has to be more than just genetics involved.
      I am thankful for that. My brother is just 16 months older than me, and he had a severe stroke when he was 38, same age my illness showed up. We both had a severe case of scarlet fever when we were younger, our fevers were very high for a week, and I am wondering if that may have contributed to our problems, who knows. There are only two siblings. He has suffered for years from the stroke.
      He has seizures, and hallucinations. He still manages to function, doesn't drive of course. He had severe pain in his head until a pain doctor prescribed something that has helped a lot. He also has paralyzed on the left side. My parent' s lived relatively healthy lives my dad smoked for years, and had a heart condition, I contribute that to the smoking he died from cancer. My mom is still alive, and at 76 still mows her yard. She has psoriasis pretty bad, but won't do anything to help keep it in check, if a medication bothers her she just quits. Other than that she seems to be healthy never goes to the doctor so we're not sure, but that is the way she chooses to live, so we just let her do as she pleases. She was dependent on my dad doesn't drive, my aunt lives near her so she takes her places. My dad left enough money for my mom to be comfortable, but she rarely spends any. Oh well that's another story. I hate our diseases, I am grateful we were born at a later date, they used to put people with physical illness' in mental institutions. I read the history of ms, not a good up until the 1900's people were treated badly. Can you imagine being in a mental institution when your mind is still intact. I have read everything I can about ms, there isn't a lot to read about dystonia. Well I think I have talked long enough. Have a good day, and I hope those problems get better.

    • Prayer

      From angela56 October 21

      I hope the doctor can do something to ease your pain. I hate spasms, and with the dystonia in the beginning my neck would just pull really hard to the right side.
      This disease is truly unbelieveable in it's ability to change the structure of your body. The curvature in my spine was caused by the dystonia. I know it can be emotionally frustrating too. Not to mention the multiple sclerosis that is a monster too. I look at people who are well ,even older people and I think how grateful they should be for the ability to walk, some of them walk so quickly I can't believe it.
      My spine is pretty much a mess. Narrowed discs, a little osteoarthritis, and the curvature. I think the accident just made everything worse. I did not know about the arthritis or the narrowed discs.
      I hope only the best for you. The diagnosis is definitely a beginning. I remember not knowing what dystonia was. My family researched it at the library. That's what we do when there is a problem, we look it up to see exactly what it is.
      I think knowledge helps. Even if it doesn't heal at least you know what is going on.
      Of course working in a university you are aware of that.
      Take care.
      Love, Angela

    • Prayer

      From nerisa86 October 14

      Thank you so much for your condolences and I appreciate you taking time out to check on my status(=!
      You have my prayers

    Read Hugbook

  • Support Groups

    • Close Multiple Sclerosis (MS)
      Type: Relapsing-remitting MS

      Just diagnosed February 3, 2009, but have probably had MS for about 12 years or more. My symptoms are dystonia, seizures, vertigo, dizziness, fatigue, tremors, tingling, numbness, optic neuritis, muscle weakness, balance problems, walking problems, etc, etc

      Treatments

      Solumedrol Working / Worked
      It really helps, but the side effects are bad.
      Baclofen Working / Worked
      Helps with spasticity. Caused some fatigue at first, but not bad now.
      Physical Therapy Working / Worked
      Helped with knowing how to exercise although legs still get weak and collapse sometimes
      Provigil Working / Worked
      Rebif Not Working
      My doctor had me stop the Rebif as I kept having relapses.
      Solumedrol Working / Worked
      It really helps, but the side effects are bad.
      Topamax Working / Worked
      I like Topamax because it also helps my Dystonia symptoms and I don't have to get botox injections as often.
    • Close Dystonia

      I have dystonia and MS. I have cervical dystonia, writer's cramp, and now my right foot has developed a mind of it's own and suddenly turns completely toward the inside at random times of the day.

  • Groups

  • Friends


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