It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuromuscular Diseases Message Board

  • Gait problem, cramps, weakness?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 02-09-2011, 10:54 AM   #1
    rrrrrhonda
    Junior Member
    (female)
     
    rrrrrhonda's Avatar
     
    Join Date: Oct 2010
    Location: Wichita, KS USA
    Posts: 12
    rrrrrhonda HB User
    Question Gait problem, cramps, weakness?

    Muscle atrophy, fatigue... these are the symptoms that have caused my
    husband's health to decline rapidly in the last couple years. He was dx with peripheral neuropathy in November and has alot of nerve damage in lower legs and feet that can't be reversed. Doc here has no idea what the problem is and referred him to KU to see a specialist in neuromuscular disorders. He will have an emg @ appt. His calf muscles are disappearing quickly and he is constantly exhausted. He is having a very difficult time keeping the store running.
    Can anyone relate to these symptoms? Could this be ALS? Is there anything he can do in the meantime for relief besides rest?
    Your input would be greatly appreciated as we feel we are grasping at straws.
    Have a wonderful day,
    Rhonda

     
    Sponsors Lightbulb
       
    Old 06-13-2011, 08:29 PM   #2
    ssimme1
    Junior Member
    (female)
     
    ssimme1's Avatar
     
    Join Date: Jun 2011
    Location: Forest Hill, MD, United States
    Posts: 14
    ssimme1 HB User
    Re: Gait problem, cramps, weakness?

    My mother has had similar symptoms. She deteriorated pretty quickly. She's been sick for four years with no diagnosis. They had suggested it could be ALS, Leukemia, among other things. She has gone through many different tests among lumbar drains, CT scans, and two PET scans. I've also noticed her calf muscles are essentially gone. She currently uses a wheelchair to get around, but we also noticed that exercise helps her, she keeps her strength up enough to be able to get around so my father and I can go about school and work with worrying too much. Have you tried exercise with him?

     
    Old 06-18-2011, 02:32 PM   #3
    rrrrrhonda
    Junior Member
    (female)
     
    rrrrrhonda's Avatar
     
    Join Date: Oct 2010
    Location: Wichita, KS USA
    Posts: 12
    rrrrrhonda HB User
    Re: Gait problem, cramps, weakness?

    So sorry to hear about your Mom. Jack was finally diagnosed a few months ago with ALS. His is a slow progressing form. They had ruled everything else out over a few months, and then he had and Electromyogram where they stuck needles into the muscles to detect nerve activity. They recommended that he does exercise, but not to the point where his muscles get sore. He just got someone to replace him at work this week and is training him. Has your Mom had this test?

     
    Old 06-18-2011, 07:53 PM   #4
    ssimme1
    Junior Member
    (female)
     
    ssimme1's Avatar
     
    Join Date: Jun 2011
    Location: Forest Hill, MD, United States
    Posts: 14
    ssimme1 HB User
    Re: Gait problem, cramps, weakness?

    She has. She's had everything. They've said ALS, Parkinson's, Leukemia, MS, she even started the shots for MS. She's has nerve tests, bone density tests, spinal drains, which was painful, among others. We're still at a loss and going along with it. She's seeing a top neurologist at Hopkins every six months, we're lucky to live about 45 minutes from Baltimore. Exercise does help her keep her strength up as opposed to doing nothing, but the doctors have had no answers for us.

     
    The following user gives a hug of support to ssimme1:
    rrrrrhonda (06-19-2011)
    Old 06-18-2011, 09:35 PM   #5
    rrrrrhonda
    Junior Member
    (female)
     
    rrrrrhonda's Avatar
     
    Join Date: Oct 2010
    Location: Wichita, KS USA
    Posts: 12
    rrrrrhonda HB User
    Re: Gait problem, cramps, weakness?

    Your Mom is fortunate to have you as an advocate. The first specialist at KU saw Jack in the morning, and he actually ruled out ALS within 5 minutes and ended up coming up with a dx of Duschains sp? Muscular Dystrophy. It is a very rare type, but usually people can live a long time with it. We were elated, until the afternoon came and they did the EMG and they started seeing all these nerves twitching under the skin all over his body like little worms crawling under his skin. He said it was ALS, 99% sure, and we had to go back in 2 months for a final diagnosis by the ALS Nerve specialist, which was slow progressing ALS. She said he was unusual because he is still walking after almost 3 years. // In doing more research, I found on utube pictures of people who walked just like Jack - limping on one leg and then kindof lunging himself forward. Does she do this? John Hopkins is such a great place from everything I have heard. It is hard to understand how they can just keep having her come back when they don't know what is wrong. Has she seen a Neuromuscular specialist? Besides exercise, are they doing anything else for her? Have they suggested she apply for Social Security? How long has she been sick? // I am so sorry your family is having to go through this. I am disabled myself with damage to my Autonomic Nervous System, and was sick 4 years before I saw a specialist who knew what I had. It was extremely stressful for everyone. Just to have a diagnosis is a great relief, no matter what it is. Hope to hear back from you soon and that in some way this helps you.

     
    Old 06-18-2011, 09:41 PM   #6
    rrrrrhonda
    Junior Member
    (female)
     
    rrrrrhonda's Avatar
     
    Join Date: Oct 2010
    Location: Wichita, KS USA
    Posts: 12
    rrrrrhonda HB User
    Re: Gait problem, cramps, weakness?

    Oh, I forgot to answer your question. Yes they did recommend some exercise but cautioned against overdoing it to the point he would be sore the next day. Right now
    he is training his replacement at work - and just being up 4 hours or so doing that is exhausting to him. He is trying to stay flexible by stretching, rides a stationary bike, and then does walk way to much at work. He should be able to stay home and do a few hours of work a day in the recliner, and then just take care of himself.

     
    Old 06-21-2011, 08:03 PM   #7
    KCA82
    Junior Member
    (male)
     
    KCA82's Avatar
     
    Join Date: Feb 2011
    Location: USA
    Posts: 24
    KCA82 HB User
    Re: Gait problem, cramps, weakness?

    Is he presenting with only abnormal issues of the peripheral nerves of the lower and outer extremities? Or does it appear to be a descending pattern?

     
    Old 06-22-2011, 06:38 PM   #8
    rrrrrhonda
    Junior Member
    (female)
     
    rrrrrhonda's Avatar
     
    Join Date: Oct 2010
    Location: Wichita, KS USA
    Posts: 12
    rrrrrhonda HB User
    Re: Gait problem, cramps, weakness?

    He has weakness that began in his lower legs, especially on the right side, and after seeing the specialist, obvious it is also in the hands and arms, but just beginning. Still becoming familiar with this jargon, but believe the it is not descending, or starting with the mouth and throat. When they did the EMG, there were abnormalities in the extremities, and also near the spine. He had ripples under the skin in all those areas too.

     
    Old 10-02-2011, 04:21 PM   #9
    ssimme1
    Junior Member
    (female)
     
    ssimme1's Avatar
     
    Join Date: Jun 2011
    Location: Forest Hill, MD, United States
    Posts: 14
    ssimme1 HB User
    Re: Gait problem, cramps, weakness?

    Her doctors are almost positive now that it is Primary Lateral Sclerosis. They were playing around with the idea for a while. It kind of has to be diagnosed through process of elimination. She goes to see her neurologist again at the end of this month.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Off-and-on right sided weakness SeraphisCain Neuromuscular Diseases 1 08-03-2009 07:01 AM
    Hand/Finger weakness - muscle stiffness oldaugie Neuromuscular Diseases 3 10-06-2007 05:30 PM
    Weakness/Fatigue recon1 Neuromuscular Diseases 0 01-15-2007 01:06 PM
    Severe Leg Cramps (long story - I ramble!) brokenbruised Neuromuscular Diseases 3 11-19-2005 03:38 AM
    Leg weakness tanbp Neuromuscular Diseases 3 04-27-2004 08:38 AM

    Tags
    cramps, gait, muscle atrophy, no pain, weakness



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:10 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!