Can it be PLS?

[JerryandGerrie]

After about six years, I think I have finally found a diagnosis that fits and it wasn't diagnosed yet by a neurologist. Somebody mentioned PLS to me so not knowing what it was, I googled it and everything that I read seems to fit my symptoms.
I was originally diagnosed six years ago with ALS and my neuro. was very open to other opinions. From there, I was diagnosed with Parkinson's, a Parkinsonism, stiff man syndrom, and MSA (Multiple System Atrophy). I have had four pulmonary embolism and one heart attack since my original diagnosis so I also have COPD and heart disease.
My Neurological symptoms include leg and arm weakness (I wear a brace for foot drop), a tremor (predominent in my right arm), poor voice quality, and chest discomfort that is not related to my COPD or my heart disease.
I am a veteran who is on a very small service connected disability and receive a great amount of medical help from the VA, Thank God. I retired after the Heart attack from a State Penal Institution as a counselor and am bored straight in my retirement.
I would love to communicate with anyone who relates with me

 

[Peg B]

Hi JerryandGerrie,

Which Geri are you?

I certainly can relate to the bored straight in retirement.

Here's my story: I had asked a neurologist in 2002 if I had ALS or MS or some systemic disease as I was having lots of trouble writing checks. She said no way - pinched nerve. I had a very uncomfortable EMG on my arms. I went to another nero and he said I needed to walk more and exercise. He did no tests. Being smarter than them I stopped going and figured I just had arthritis in my legs. But then I fell and my left leg went numb a month later, so I had back surgery. Funny thing I just thought of before surgery I had another EMG (March 03) and it was very noisy. After the operation my leg still goes numb after I walk a few minutes (3) and the top of my foot is numb. I had lots of falls and lots of leg cramps and tremors. I had increased trouble walking and was sore getting in and out of the car. Flash forward next four years. I changed jobs teacher to consultant to administrator to back to consultant. I continued to teach at a couple of universities part time and to work on my Ph.D. I realized later that each job change the most important thing was how far I had to walk or how much driving it involved. I always used voice recognition software and had a handicapped pass. In the summer of 06 I applied to be in a research project for Restless Leg Syndrome. On filling out the application, I thought maybe I ought to look into some stuff first. I told them I thought I should see my Dr. before participating. By then my baby finger was bent and I thought it was broken from volleyball years before. It also did not work for typing as I could not push the p down nor could I always control it. By September 2006 I could not move it at all and my Dr. sent me to a hand surgeon who sent me to a neurologist because there were no broken bones. I went to that neuro on a lunch break and he kept on testing. I asked lots of questions. He was very nice and patient and kept me about 45 minutes. He said. "Do you know what ALS is?" I said yes - he said "I think that is what you have." I asked "Do I have another choice?" He said "No." But thought I needed a second opinion and sent me to the University of Michigan. Funny thing was he told me his receptionist would sent it up, and she argued with me and said, “U of M will never accept you without blood work and other information." Weird huh? She gave me the wrong number to call and I had to give her the right one. Unfortunately for me I qualified for U of M and saw them Dec 7. At that point they thought it might be MMN. and I started IVIG in Jan 2007 and it seems to help. My second finger is more bent on my right had next to the baby finger, but I can control both of them now. So I have a differential DX of ALS and MMN but it looks more like MMN because I responded positively to IVIG.

I stopped working and stopped school Nov 11, 2006 and just got SS and Medicare this past October 2008. I did get 36.2 something years in and I'm OK but... I loved to work. So that is more of my story than I have written before. I hope it was not the most boring part of your day reading it. :smile: Do you have children grandchildren hobbies. Tell me that part too. Take good care, Peg