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Welcome Back Dana,
Have you had an EMG before?....and if so what were the results?....Was different types of Muscular Dystrophy talked about also?...Found this website that is excellant at pointing out many different brain, spinal cord and nerve disorders
also Myotonic Dystrophy is becoming more and more prevalant you may want to read up on that...that is a possibility for me also but the chromosome tests are so expensive the doctors all recommend against it now....they told me the treatment is the same as Im getting now..
Tizanidine (zanaflex) for the spasticity, and provigil for the fatigue and ativan for the anxiety and ambien to get to sleep and I was on prednisone (60mg-then tapered down) for 3 months just came off 3 weeks ago, I can barely walk, Im using the walker around the house again...also I take wellbutrin for the depression and percocet for the pain plus other meds for my blood pressure and potassium etc....but basically they told me 5 years until they would have a better idea to differentiate (is that a word?) between all the different diseases it COULD BE...and also offered to send me to University of Pennsylvania Hospital but talking to them there, seems the lawsuits stop them all from mis diagnosing...so waiting is the name of the game...My ANA is also 1:1280 and SSA 64but all other blood work is normal so they said not lupus and if sjogrens, my eyes and mouth test are ok not too dry now so no other treatment for it...Did you have lesions on the MRI to be possible
MS? I spent 4 days (February) in the hospital from muscle spasms across the chest that i thought i was having heart problems...all is fine there thank goodness...just tightness and shortness of breath....now i can barely get up to walk from sitting or laying down...I hope you find answers soon and if you got any suggestions for me please I am open for any help....My children and my ex husband all think Im crazy at times and are tired of hearing how much I hurt and cant do things....becuase I do have good days...I had physical therapy and occupational therapy coming to the home, not much more they can show me now and for me to go to a center, I would be too exhausted to drive home after...just a vicious cycle of the unknown....very lonely and depressive at times....I understand you being scared of PPMS...but also the not knowing is scarier....becuase different diseases were mentioned to me that do cause death in 3 to 5 years and no tests for them also...my EMG when I first
started symptoms, which then i was falling down once in a while and cognitive was bad, no other leg or arm troubles, and my EMG was normal that was 1 1/2 years ago...I was the EMG repeated...it cant be normal now...I did not have this terrible spasticity in legs and lower arms that i have now..and clonus so bad in my legs and hands....the pain i think is becuase of the spasticity on my joints and muscles and bones...do you agree?....I am very off balance also...not really vertigo, not i fall backwards if i let go and wobble...I hope this is understandable and I know Ive rambled...gosh I pray you get some answers as we all deserve and are searching here....thank you!!...Michelle Mordan
Dana Clary <dclary@...> wrote:
Hello my beautiful group! Happy March!I apologize for being out for so long. I went on my vacation at the end of February, and needless to say, it kicked my butt. These last few weeks have been a little slice of hell! I went to the neurologist last week to check-in and there were a couple things she said that have me freaked out.She's got me in the "Possible MS" category just like a lot of you are. At my appointment, she got a piece of paper and wrote out the different trends for Relapsing Remitting, Relapsing Progressive, and Primary Progressive. She said if I am MS, I'm Primary Progressive, right now, however, I'm lucky enough to be declining at a lower slope than most. I know that we have other people on the boards with PPMS, JIM! I'd love to hear from you. Right now, I'm scared of it.The second thing she is considering, is that it's not MS at all. I guess that's the other side of the coin--ya got MS or ya don't. There is a RARE disease called "Stiff Person's Syndrome (SPS)" that she thinks I might fit into. This disease only effects 1 in a million. They know much less about it than MS, but believe it is also an auto-immune disease. As far as treatment, there is Baclofen, which I'm already on, and a lifetime supply of Valium. I think that the Valium would be fun for the first few weeks...then you'd be sick of feeling sedated all the time.I've been really angry about all of this since my appointment. I want to have a say in what disease I have! If there could be multiple problems, or they can't decide between the two, I think the patient should get the deciding vote! That sounds fair!SPS is detected by EMG and a bloodtest (but, the bloodtest isn't always accurate..kinda like MS with the spinal fluid, some are positive some aren't). I'm getting those tests in April. Does anyone know if the EMG is useful for seeing MS problems?I'm stressed and I'm tired. I have started walking on my treadmill (started with 6 1/2 minutes LOL!) and lifting little teeny tiny weights to improve the muscles that I do have and keep some muscle mass. I have lost a lot of it with the weight I've lost. My neuro is also going to get me set up with physical therapy so we can try to stretch out and ease up my legs, back, and arms.I'm also ready to start my application for disability. It's so bizarre to me that they make people fight for the term "disabled." It's something I've had a really hard time with.Anyway, I'm sorry this is all so crappy! I'd like to welcome all the new members, too! I am so sorry for not being a better leader and being around more to keep the chatter going. I've been working on just trying to feel like a person lately!Love you guys!~Dana
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