morgan617 Posted April 6, 2007 Report Share Posted April 6, 2007 I have episodes of complete paralysis, as some of you know. I have been diagnosed with everything, but a non mental illness. A social worker came to the house to see my son about his stuff and asked what was up with my health. So I just gave her this little over view.She said it sounds like I have periodic paralysis, which is a form of Muscular Dystrophy. She knew all about it!!!! She said people get a lot of diagnoses before they get the proper one. I asked if they were all mental health ones and she said mostly. She suggested my pcp call the medical director of the clinic here.Well, he didn't want to, but said I could...how nice of him to give me permission.. Anyway, i found an email address and decided it's easier to be blown off via email than by phone.They read my info and made an appt for me!!!! They are going to do testing. There's no gene testing, but they can do blood work that pretty definitively diagnoses it. So My appt is the end of May. Wish me luck guys. I never wish bad health on myself, but geez, to have one validation and to think this person really read and listened to me is great.....anxiouslyhopefulmorgan Quote Link to comment Share on other sites More sharing options...
MNsue Posted April 6, 2007 Report Share Posted April 6, 2007 Morgan,I hope you can find some answers and some treatment with this new specialist. It took me 16 years to get a diagnosis. It helps to validate what we know is true. Rhonda Quote Link to comment Share on other sites More sharing options...
nadine Posted April 6, 2007 Report Share Posted April 6, 2007 Morgan-Great social worker---helping your son and you!! I am so glad that you were able to get a response and this apt. so quickly. It is nice to hear the positive as far as getting in to see MDs and finding contacts. We certainly will hope for the best from this appt. It is so frustrating when we know our bodies, know something is very wrong and struggle with the correct diagnosis and treatments for so long and often not taken seriously! Quote Link to comment Share on other sites More sharing options...
yogini Posted April 6, 2007 Report Share Posted April 6, 2007 Morgan,That is great. I know how much it would mean to you to finally have a diagnosis!-Rita Quote Link to comment Share on other sites More sharing options...
corina Posted April 7, 2007 Report Share Posted April 7, 2007 hi morgan,this is really good news. finally someone whpo is taking you serious!!! i will be thinking of you (as i often do) and sending best thoughts. like rita (and others, i'm sure!), i know what it would mean to you to finally have a diagnosis. keep us posted morgan!take care,corina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 8, 2007 Report Share Posted April 8, 2007 ohmorganwiththebuttofahippo! (sorry, but when you wrote that in an earlier post i about keeled over laughing!)Of course the last thing we want you to have is MD. HOWEVER...an answer...FINALLY. Now, wouldn't that be something? Just to see you sign off with the word 'hopeful' in your name...made me feel good. I feel like somehow there has to be an answer for you...and I hope you find one.Are there treatments that could help at all if this is what you have? It would make sense that MD would also cause ANS problems wouldn't it? Just curious.Anyways, keep us posted, of course!Love, Em Quote Link to comment Share on other sites More sharing options...
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