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I have never posted on any forums before but have been reading this one for a month or so and have learned a lot
I was just diagnosed Jan, after a year of testing and watching the progression of symptoms. Looking back symptoms may have started in 1995, when diagnosed with "tendenitis in a hip, (pain and weakness), it did not resolve, then in 1999 "SI joint pain" and 6 months in chronic pain rehab, (leg now is weak but pain is controlled).
About a year or more ago, my leg is now to weak to lift and I have footdrop. First neuro unsure of what it is so sent me to a specialist on ALS, 1.5 hrs in her exam room complete with EMG and nerve conduction tests, I do not have ALS, the top 2 possible diagnosis are PLS or PPMS (primary progressive MS). Last month she ruled out PPMS and I have been given a diagnosis of PLS.
That is the abridged version of my story.
Welcome to the Forum Nancy! Are you in fact, a nurse? It's nice to meet you but sorry you have reason to seek us. :)
Hi Nancy, Welcome to the family none of us wanted to be in, here we are helping each as we can, supporting, offering info, alot of hand holding and my favorite {{{{{HUGGING}}}}, All these people hear are so loving and kind and at times telling the truth and harsh reality. We help each other on our new journey together adjusting to our new reality. {{HUG}}
Hi there Nancy! Welcome to the forum. There's lots of good information here and deep friendships as well. Sorry about your diagnosis, I know exactly how you are feeling right now. You are struggling up the hill, but you will get to the top, it just takes time. We are here for you if you need to ask anything.
Thanks for the encouragement. I really am a nurse, I have worked in pediatrics for the last 23 years plus another 10 years on adult floors. One of my biggest fear is, I love peds and am not sure what I can do in the hospital with a cane or from a w/c. Now that I have a diagnosis, it's time for HR to hopefully help me find a new job, I'm not sure how long I can walk the hosp floors.
Welcome to the group Nancy. Maybe going into private nursing, where you don't have to walk long hospital halls, but in home nursing or small nursing facility. I am sure if you want to countinue in the nursing field, you will find a way to manage. I have had to restructure the way I do my work because of weaknesses. The point is do as much as possible to do the things you enjoy for as long as possible, even if you have to modify your job type a little.
1st off, sorry you are here.
You'll find many helpful members on this forum if you have questions or just need to vent.

2nd, thank you very much for taking care of all our kids for so many years.

nancy.. them boots are made for walking....and thats what you should do...for as long as you can,,u never know sometimes u last longer than u think........good luck...johnno
Nancy, welcome to the group. Sorry for your diagnosis and I hope and pray that it is a slow progression for you. I also hope that you can continue to do the wonderful work as a nurse and that your employer can accomodate to your health needs. I'm your neighbor here in Washington, so if you ever plan a trip to Seattle let me know and we can meet for coffee.

Many blessings to you as you face the challenges that this disease brings us. This forum is a very helpful tool and a comforting place to share your feelings.

Hi, Nancy. So sorry to hear about your diagnosis; after about 2.5 years of wondering what was wrong with me, I was referred to OHSU and diagnosed with PLS in August, 2011. As I am practically a neighbor (15 miles away in Scio), I will be following your case with interest and will share any information I come up with. Good luck to you--hope progression is slow.
I have a coworker who live in Scio.
I was origionally to see a MD at OHSU but he had no openings for 6 months, so they tried one at Providence, she is a extremely bright on ALS boards, and specializing in neuromuscular diseases.
Sunday we (my husband and I) are telling the kids (29 and 25) about the diagnosis, my son (25) is conserned the daughter (29) when I told her over a year ago my legs were getting weak said "go excercise more" then told my daughter- in -law, 6-8 months ago it was all in my head. I don't know if she is scared or in denial. It may be an interesting evening. Nancy :roll:
I, too, thought I just needed to exercise more. I've done office work the majority of my life (too much sitting) and have had some chronic back trouble, so I thought I was getting old and out of shape. I now suspect my chronic back problem may be PLS related. After a severe bout of flu (which may have been H1N1) my symptoms suddenly became much worse and I was referred to a neurologist. I was unable to afford genetic testing but fear there may be a genetic predisposition, as my father and grandfather both lost the use of their legs late in life. My father's problems followed a serious head injury suffered when his vehicle collided with a train, and my grandfather was thought to have had a series of small strokes, so I can't be sure.

As a nurse, you obviously have led a physically active life.
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