27 Responses to symptoms

  1. Just call me Blitz says:

    I have not read everything on your site yet however I find it very inspiring. Three years ago my wife was extremely active and seemingly healthy, but now is dealing with the realization that she may dependant on a wheelchair and the support of others for the rest of her life. What started as a limp resulting in the “temporary” use of a cane, has inexplicably led to an unimaginable change in our lives.
    She is angry, scared, mad at God and the world.
    We have been to so many neurologists and on our possibly our last attempt for a miracle-have accepted, I think, the diagnosis of PLS.
    We have many trials and challenges to face, it is so difficult but I known we must not give up. It is so hard to understand why.

  2. Sherry says:

    I’m glad you have written, and I know that this is a fearful and unsure time for your wife, as well as yourself. Its not easy to know how to proceed when the ground falls out from under you; but, in time, you will come to view your situation with less fear, and be able to put your lives on more stable ground. It takes time. Have courage, and for now, take care of what needs to be done as it presents itself.

    Sherry

  3. Juanita says:

    Are you OK? Seems like a long time since you posted so I am concerned. I hope you are just having writer’s block, not something physically debilitating. My thoughts are with you.

  4. Juanita says:

    Since you haven’t posted for awhile, I am worried about you. I hope you are OK and suffering only from temporary writer’s block. If not, I wish good things for you and hope for your future.

  5. Sherry says:

    Hi Juanita ~

    I am fine; just diverted by summer activity.

    Sherry

  6. Carolyn says:

    Hi Sherry,
    I came across your website while researching PLS and ALS. My best friend in the entire world has been showing some symptons. We just went to a motor neurone specialist in Manhatten, because her doctor recommended him. He diagnosed her with PLS and wanted her to see this specialist who is now running test. Needless to say she has been a basket case over all this and finding your site has assured me she can live with this illness. She will be going for the EMG test in a few weeks and just wondering if that test can definately say for sure if she has PLS ??
    If you could give me some info about that much appreciated. If you could email privately I would appreciate that also.
    Thank you

  7. Sherry says:

    Hi Carolyn ~

    As I recall, the EMG determines if the lower motor neurons are involved (PLS affects upper motor neurons only) in the data that is gained from undergoing the test. It is not definitive though; here is a good explanation:

    “Whether serial electromyography (EMG) has a role in the diagnosis of PLS is uncertain; EMG might be used to look for the evolution of lower motor neuron findings in the absence of clinical evidence to suggest a change into ALS, but the clinical implication would be uncertain.”

    A good neurologist can intuit whether a person has PLS or ALS; but the most accurate way of determining PLS requires a 3-year timeline in which symptoms will indicate a diagnosis.

    I know your friend has lost the ground beneath her feet; it is terrifying learning that your body has been severely altered. The initial shock cannot be avoided, but, with time, she will discover that she can function in, and enjoy, her life.

    I’m glad that she has you for a friend.

    Sherry

  8. Ella Poindexter says:

    My thoughts are with all of you. I have PLS also. After several years of struggling with symptoms? , first noticed in early 1996, I was diagnosed in 2005. Long history of doctors
    and tests. My story is similar to all of yours.

  9. Sherry says:

    Hi Ella ~

    I appreciate your comment; it is reaffirming to know that others share a similar experience.

    Sherry

  10. Joe says:

    Thanks Sherry. For the last hour & a half my wife has been reading your entire site to me. About 3 months ago My wife was having problems, She went to our family doctor to get check out and while doing some routine checks, The doctor checked her Reflexes. I guess they was very different from the normal, So the doctor sent Becky (My Wife) to a Neurologist, This doc did some MRI’s and a bunch of other test that took about 3 weeks And Diagnose her with PLS. He told Becky he wanted to get a 2nd opinion and set her up an appointment at the Mayo Clinic in MN. Two weeks later we went there and spent a week going through more of the same test and a few new ones like the Spinal tap. Which made her sick for about a week. They gave the same diagnoses or PLS. I guess we should be happy, We didn’t get the run around trying to figure it out. Now She was working. She was a RN and just took a new Job as the wellness director. 40+ hours a week. But when she started having problems. balance was one. always sore was another, She had to resign and take a part time position which was about 3 days a week, that even became to much and she went to every other weekend, After the mayo clinic she worked one more weekend and had to quit. She applied for Disability and got it with no problems. But has to wait 5 months for her 1st check. As if the PLS wasn’t enough. Your story touched us. We now have an ideal what to expect. We are just starting our journey and are already making plans to live with it. The Peeing your jeans brought us some Memories. We’ve only had it happen once so far. Was in Kohls and she told me she had to go. Well the rest room was on the far side of the store. so we took off. But about half way she stopped and when i looked at her she said it’s coming out and i can’t stop it with her legs crossed tightly. So I gave her the clothes we had picked out I walked in front of her to the restroom. I know she felt bad. but I can explain how terrible I felt for her. I asked a female worker to tell my wife to wait for me and i took off shopping. I grabbed some underwear and sweatpants then ran to the checkout Paid for them. When i return here she was standing outside the bathroom holding the dress in front of her. The worker didn’t even say a word to her. Well she changed cloths and we took off. This was about 4 months before she went to the doctor. Caught us off guard big time. After reading your story I guess we need to start figuring out when she needs to stop drinking. She drinks water all the time. She already uses a cane and we got a handicap tag for the car. Though we rarely use it at this point. We just walk slower, so like you said everything takes longer. She works hard to help out around the house. I’m confused if i should be pushing her to keep her strength up or let her sleep most of the day. As of right now. She goes to bed with me most of the time. That is about 9pm, I get up at 4:35am. I text her at 9am which wakes her up, It’s my 1st break. Then I think she gets up around 11am. But reading your story might help her get back in a pattern. Now she knows she’ll be able to do things just it’ll take a lot longer. And that she will always be able to a little. Oh she just turned 50 in September. I do think she worries I’m going to leave her. She said she has strange dreams where she needs help and I’m never there. I keep reassuring her that the I Do followed for better or worse along with In sickness & in Health. And of course we both have a since of humor so i ask her if she’s trying to get rid of me. I couldn’t live with out her ? So Thank you so Much. The info in your story sure gave us hope ? Becky & Joe from Iowa

  11. Anne says:

    I was just diagnosed with PLS yesterday after 2 years of symptoms. I would love to talk on the phone with one of you. Anyone willing to PM me their phone number?

  12. Verna Paul says:

    After approximately 4 years of ‘stiff leggs’ my son started seeking medical evaluations about 6 months ago. He is in the process of being diagnosed and PLS has been mentioned. I’d like to be in touch with Sherry and others as a means of being informed directly with others having PLS.
    Thanks for the imput of information.

  13. Sherry says:

    Hi Anne ~

    I’m glad that you have found this site. I hope that someone contacts you; it is beneficial to communicate with others who share similar experiences as you those that you deal with. Have you connected with the online Yahoo group, PLS-FRIENDS? I found that a valuable resource when first diagnosed. It was comforting to read of others in the same situation as myself.

    Sherry

  14. Sherry says:

    Hi Verna ~

    Glad you commented. The online Yahoo group, PLS-Friends, is a wonderful place to start. I wish your son well, and hope that he will soon get a definitive diagnosis.

    Sherry

  15. Sherry says:

    Hi Joe and Becky ~

    I’m so glad you shared your experiences on Becky’s PLS diagnosis. It reminds me of my challenges when I first noticed PLS symptoms occurring, and I know that other readers will benefit from your words.

    In regard to Becky accepting her “new body/new life;” it will take time. Give her that time, yet be aware that she is accepting these changes. My family has always supported me in dealing with PLS; sometimes that support has been in the form of “tough love.” If they see me sinking into self-pity, I get called on it, and am not allowed to stay there for very long. You and Becky have some tough challenges now; may those challenges make you stronger and more appreciative of all that you have to be grateful for.

    Sherry

  16. Nancy Keiser says:

    I started having symptoms in 2003 with imbalance, overall pain and left foot dragging. My general practitioner thought I may have fibromyalgia. He suggested seeing an alternative medicine doctor who thought I had heavy-metal poisoning. A friend at work had me communicate with his brother, a doctor at Mayo. I made an appointment to go to Rochester in 2005. After a series of tests I received a diagnosis of PLS. My symptoms increased and my St. Louis neurologist thought I may have Multiple System Atrophy. I returned to Mayo in July, 2012, and PLS was reconfirmed as well as Autonomic Neuropathy. I have difficulty speaking and swallowing, drool, cannot walk without a walker, and have lots of neck pain. I am blessed to have a wonderful husband and family.

  17. Sherry says:

    Hi Nancy ~

    You had to do a lot of trials to confirm a diagnosis. Isn’t it true, that when our lives turn upside down, that we find what is most important – a loving and supportive family? Thanks for your contribution.

    Sherry

  18. Karen Gallimore says:

    Wow! What I’ve read so far on your blog is exactly what symptoms and feelings I felt when I was finally told exactly what I had. My reaction initial reaction was I’m angry, I’m mad, I’m scared. Why me? Why now?

    Now, I’m holding on to what independence I have left and when it comes to friends and family please don’t get me wrong but when it comes to what I can and can’t do they can be overly caring when it comes to my independence. When comes down to it I can be very stubborn. :-)

    How do I tell them nicely that I’m not a total invalid and let me be ME!

  19. Heidi J says:

    Hi all! I just turned 41 and have had my symptons for over a year. Started with my left knee over extending. Dr did X-ray and I had a torn ligament so he sent me to physical therapy. There I had 2 awesome therapist who really cared and said that my muscle tone was worse than that of someone w/ an injury and said I really needed to see a neurologist. Hi all! I just turned 41 and have had my symptons for over a year. Started with my left knee over extending. Dr did X-ray and I had a torn ligament so he sent me to physical therapy. Did pretty good for a few month, then if I was nervous or flustered my left leg froze. There I had 2 awesome therapist who really cared and said that my muscle tone was worse than that of someone w/ an injury and said I really needed to see a neurologist. I did ok for about 2 months then if I was nervous or flustered my left leg froze and I walked like i had a corn cob up my butt (sorry country girl lol) I was in a bad car accident the end of September 2012, was tboned, spun & flipped my SUV but i was able to crawl out the sunroof & walk away (God obviously has bigger plans for me). By the end of October I was using a cane to walk. I don’t know if it was the accident or cold weather or combo that caused my quick downward spiral. So 3 MRIs, EMG, a bone marrow biopsy (no cancer yeah! Just the protein in my blood), spinal tap, and full body X-rays later my 2 drs (neurologist & spine dr) agree is not ALS and have diagnosed me with PLS. It has been such a huge adjustment for myself & family. My husband (and children) have been truly AWESOME and after hiding this I created a group of close friends/family on Facebook to share my journey. We are having to sell our 2 story home as the stairs are hard for me to use, I’m really glad I’m not the only one that cries at nothing I seriously wondered what was wrong with me, I thought I was going to have to stop watching TV! Lol, luckily I can still make it to the restroom but now I’m worried that’s soon to come. I have been on medical leave for only 2 work days, 4 days total and I can’t believe how much better I feel already just to to have that stress! I even worked hard this weekend getting our house ready for the market & still not much pain! To date, I have only been taking Ibuprofen and occasionally tramadol (as the spinal tap 3 1/2 wks ago seemed to trigger all kinds of pain). Dr gave me Valium but I had to sell them to offset medical expenses—kidding!–I didn’t like the way the made me feel so today I started Badofen and after we see how my body reacts to this, I’ll add neurontin (try

  20. Sherry says:

    Hi Heidi ~

    Glad that you checked in with us. Sounds like you went through a lot before arriving at an accurate diagnosis.

    Creating a Facebook page is a wonderful idea. If you’d care to share it with us, send us the link.

    Baclofen helped me a great deal when I was first diagnosed, and I hope it will do the same for you.

    Regards,

    Sherry

  21. Sherry says:

    Hi Karen ~

    I respect that you’re independence is important to you; it will serve you well. When I was first diagnosed, I also fought to keep my independence. I realized that I was partly holding on to it, to prove to others that I didn’t need their help; I wanted them to see how capable I still was. I have now learned to graciously accept kind offers of help, as people want to express, in the only way they can, the respect they have for your spirit and strength. I assure you, there will be many opportunities in which you’ll be able to exercise your independence.

    Best,

    Sherry

  22. Micki W. says:

    Sherry,
    Hi, I hope this finds you well. My mom has PLS, she was diagnosed with ALS in 2010 and her Dr. has told us that she has PLS, her symptoms started in 2000. It took from 2000 – 2010 to get mom diagnosed with a long progression of doctors. She is now 76 yrs old, has become wheelchair dependent about 2-3 yrs ago, lost her power of speech 1 – 2 yrs ago. Mom does some amazing oil paintings which I post on Facebook “ALS ARTIST, OILS by Carol J Mumma” she stays busy. My husband and I are her fulltime caregivers with relief help from my siblings. I am looking for a site where mom can go for support and maybe I too can go to better understand what she is going through, and maybe some caregiver support. Thank you for your blog and God Bless you,
    Micki W.

  23. gwen0531 says:

    Hi, I found your blog browsing through the web, searching on everything on PLS. My grandpa was diagnosed with PLS and my dad started to show symptoms several years ago (he’s in his 50s now). I’m glad that I’ve found your blog and will continue to read it.

  24. Rebecca Towne says:

    Hi, My neurologist isn’t sure if I have PLS or ALS. My left leg I drag around all the time. And my left arm has spasticity. My balance is affected. I had to quit my job cause I tripped on things all the time. They were afraid I would hurt myself. My muscles are weakened too. It has been two or more years since I had my first symptom. I am dealing with it all right so far. It would be nice to know what to expect. Becky

  25. Sherry says:

    Hi Micki ~

    It has taken so long in responding to your comment, due to a spate of hacking attempts on the server that hosts this site.

    Your mother seems a remarkable woman who has chosen to live a full life in spite of the advent of PLS. The fact that she continues to express herself through her painting is equally remarkable.

    It is good that all of your family can lend a hand in taking care of your mom. That requires love and dedication, and tends to take a toll on those who are giving the care. Here’s a site that may be helpful for you and your family: Spastic Paraplegia Foundation has valuable information regarding PLS, that will benefit all of you. Also, PLS-Friends is an online Yahoo Group run by people who are living with PLS. Hope these help.

    Thank you for commenting, Micki

    Sherry

  26. Sherry says:

    Gwen ~

    Thank you for commenting. Would be interested to know what you find out about 2 of your family having PLS. Data indicates that PLS isn’t genetic. Data isn’t always correct though.

    This site was closed due to hacker attacks. The reason for such a delayed reply.

    Thank you Gwen.

    Sherry

  27. Sherry says:

    Hi Becky ~

    A neurologist that frequently deals with ALS / PLS patients can be to within 75% accurate in diagnosis, but there’s no getting around the waiting period.

    Hang in there, take care of yourself and don’t sink – swim.

    Sherry

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