Michelle,

 

This reply has been a long time coming!  I'm pokey.  =)

 

I haven't had an EMG before. How are the needles??? 

 

How long have all of your symptoms been going on?  I am so sorry that you are going through so much.  They are saying 5 years from now before they will be able to tell?  Geesh...I hope not. 

 

My brain MRI has shown lesions.  I've had two MRI's done. Each one showed lesions, but they weren't able to consclusively call it MS.  I don't understand it.  What are your MRI results?

 

I am so sorry that your children and ex aren't supportive.  Especially because you need it so much right now.  Take the time to love yourself a little extra.  Do you have anyone close you can talk to???  I hope so.  If not, I'm glad you've found the boards.

 

What are you dealing with currently?  I hate spasticity!  I don't know yet why it hurts.  Sometimes just sitting my muscles start getting so tight that I can't stand it anymore.  I am getting so tired so fast--arms and legs and...uh, self! 

 

What testing do you have coming up???  I had a lot of bloodwork a month or so ago, all came back normal.  Lyme, ANA, CPK, some other crap.  My neuro wanted me to start seeing a regular GP and recommended one in her building. So, I'm going to go see her on Monday.  I've been getting that rib pain (MS hug?) and so the neuro wants me to get my gall bladder checked out just to cover our bases.  The pain is on both my right and left sides, front and back, girdle style.  She doesn't think it's gallbadder but since we have no other explanation.  My EMG is the 22nd.  My next MRI isn't due until August. 

 

It's a real pleasure to meet you, Michelle!  I hope that we're able to help each other through this!

 

Love,

Dana

 

 

 

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