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



Muscular Dystrophy Message Board

  • Can someone PLEASE let me know what their "initial" symptoms were?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-29-2007, 10:47 AM   #1
    hopalong_too
    Senior Veteran
    (female)
     
    hopalong_too's Avatar
     
    Join Date: Aug 2005
    Location: Washington
    Posts: 790
    hopalong_too HB User
    Can someone PLEASE let me know what their "initial" symptoms were?

    Hi all, I have been lurking here for quite some time. I have read all the very informative posts. Thank you! I'm not sure where to start except to say that I am scared and don't know exactly where to turn. I am 50 years old. I never had any problems that greatly concerned me until about a year ago. I had surgey on my ankle and all was going well but I took much longer to heal than the norm. I went to massage therapy to try to limber up as my muscles in my hips and thighs were not working like they had previously. I am still going as things have not improved. I am having increasing difficulty when I stand up in that my legs feel stiff and I really have to concentrate to get them going. I have some difficulty with the actual act of standing up but am better able to do it with holding on and/or spreading my feet for leverage. I can still get up from the toilet but it is a little more strenuous an activity than before. I was going to get the mail the other day and I was just walking along my street. My foot twisted slightly and I just couldn't stop myself from falling. It was like my legs just fell out from under me. I had to go up on my knees to get up, but I did get up! It was the third such fall. I have been trying to exercise to gain back some strength but it seems the more I try to exercise the worse the situation gets. The top of my thighs are getting so much thinner and for some reason my belly has started to hang out. I have tried to do sit ups but can't get up!!! There just seems to be a lack of muscle in the rectus abdominus and I don't recall any mention of that by anyone. I started taking thyroid medicine about three months ago. It took me a while to find a doctor who would treat my symptoms and the fact that my FT's were all too low but my TSH was normal. I was also low on Vitamin D but after mega doses that has improved and I thought it would help with my muscles but it is still deteriorating. I also have some bone pain in my hips. I told my GP and she did an xray to check for problems. Nothing showed up. I went to a naturopathic doctor and he said, "Well, sitting here looking at you, it doesn't appear that anything is severely wrong!" No, it doesn't appear that way to LOOK at me but I am starting to get scared!

    I have read with interest how you are all doing now. There is no one in my family that has MD. One weird coincidence that I read about and didn't see mentioned here is that I had 3 breech deliveries and I saw a study that said there MAY be a link between breech presentation and the mother's lack of abdominal muscles (??) and being a carrier of DMD. I have one son and he appears fine but the others are girls so I wouldn't know if they are carriers. It said that in later adulthood the carrier may start manifesting symptoms and that is how I started to read this board.

    I have no upper body extremity problems. It seems to be entirely tied to my hip flexors, my abdominal muscles and I'm not really sure what other proximal leg muscles. I also have a positive Trendelenburg sign (according to my physical therapist).

    PLEASE if anyone could give me some idea of how it all started especially if you had no noticeable symptoms as a young adult.
    The doctor's all say I "look" fine! I am taking antidepressants as well but I feel my low mood has to do with this "problem" and the fact that I am not getting any help. Is there anything I can look for that may give a better indication of the problem. This has been about a year. Can I continue to hide it from my family until I know any more? They all go skiing and I just say I am not up to it! Wow! I would just love to go but I KNOW my legs would just buckle! Any help would be appreciated and I would really appreciate knowing how it was in the early days! Thank you from my heart! Sorry to ramble on so much but I have just so many questions and can't get anyone to listen. How far does this have to progress before I am heard? Hoppy

    Last edited by hopalong_too; 12-29-2007 at 11:30 PM. Reason: added info

     
    Sponsors Lightbulb
       
    Old 12-29-2007, 11:06 AM   #2
    michigani
    Senior Veteran
    (male)
     
    michigani's Avatar
     
    Join Date: Dec 2004
    Location: Michigan
    Posts: 538
    michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Hi Hoppy,

    Thanks for seeking "our" advice. I don't wish to scare you or attempt to diagnose your problem by any means. But you just described MY symptoms. I'm a 46 year old white male with Limb-Girdle Muscular Dystrophy (LGMD). Let me describe a typical adult case of LGMD:

    You had a "normal" childhood, high school and college years.
    You may have been one of the slower kids, but basically normal.
    As an adult you start falling inexplicably
    Stairs, ladders and getting up from low chairs and sofas becomes difficult.
    Running and kicking feels strange,
    Then later on, walking feels strange.
    Your arms, hands, feet, fingers and toes seem "okay"
    Blood tests reveal an elevated CK level, >500 (80-120) is normal
    (CK leaks into the blood from damaged muscle cells)
    You hide all of this from your family (things like getting up or climbing stairs when they are not looking).

    This at least were my personal LGMD symptoms which started at 39. My advice is to contact your local MDA clinic. They are the experts and can give you the answers you seek.

    Almost all of the adults on this MD board are going through this. I wish you the best of luck. Please post again and keep us posted of your situation.

    Mark

    Last edited by michigani; 12-29-2007 at 11:09 AM.

     
    Old 12-29-2007, 12:27 PM   #3
    hopalong_too
    Senior Veteran
    (female)
     
    hopalong_too's Avatar
     
    Join Date: Aug 2005
    Location: Washington
    Posts: 790
    hopalong_too HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Mark, Thank you SO MUCH for your quick and honest reply. Don't worry about scaring me. That would never be the case. I want to hear "the truth" from someone. I appreciate having a place to turn where someone might understand. I will start to keep a more detailed journal so I can see how things are going. I have a few more points and questions if you don't mind.

    Why is is easier to go down the stairs than up the stairs? I used to be able to get up off the ground from a seated cross legged position. Now I need to go onto my knees and then get up preferably with the help of something. I can sometimes still manage on my own.
    I also can still raise my leg up off the ground (ie lift the knee) but have difficult time when the action is needed--stairs, getting into bathtub, climbing, etc. Why is it easier to raise my leg when I am just doing nothing? And I can bring my knee up in bed but need to roll over to sit up. It is with resistance that most of the problems seem to be occurring. Is this normally the case and would it just progress over time? It seems when I am standing and not paying attention, then I check myself, I usually have quite a sway back (lordosis) and my knees are hyperextended a lot of the time. I cannot squat and get up by myself but I can still walk on my toes most of the time. It just doesn't make any sense. Did you find the same thing? Please could you give me a few examples if you remember? I need to know that others may have experienced this. Thank you once again for your support! Hoppy

    Although I addressed this to Mark, it is only because he was the one that originally answered my post. (Thank you Mark). I would love to hear more from Mark and/or from anyone else willing to share their experiences.

    Last edited by hopalong_too; 12-29-2007 at 11:01 PM.

     
    Old 12-31-2007, 09:30 AM   #4
    SHANTACLARE61
    Member
    (female)
     
    SHANTACLARE61's Avatar
     
    Join Date: Oct 2007
    Location: USA
    Posts: 63
    SHANTACLARE61 HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Hello Hoppy, My name is Mary. I am 46 years old , you may have read some of my posts but I'll go on any way. There is no known history of MD in my family, I was never athletic, a slow runner, was amazed at how hard I threw a ball but it never seemed to go very far, squats, forget it! As a young adult I would fall alot when I would drink alchohol.( I 'm trying to remember the things that stick out that seemed different from most people). Something else I remember that I haven't mentioned before was that I used to have a stange cramping like annoying pain in my legs that would last for a day or two. My mom said it was Charley horses but I Knew the difference after a while , then grew out of it. Stange that you mentioned sway back and hyperextended knees because that was me! When I was early 20's after my two oldest were born I had to pull myself up from the floor by holding on to something I also remember that I couldn't lift myself up from the side of a pool. I first noticed steps being hard in my mid to late thirtys. I have always it seems had lower back and hip pain, I belive this is due to strain on these areas because the muscle strength is not there so the joints over compensate. I had hid this from others for a long time and finally had it cheked out when I realized it wasn't normal and it wasn't because I was out of shape. To answer your question about going up vs down the stairs I think it is just that different muscles are used for each movement and not all muscles are affected the same. And maybe your balance is off due to your core muscles being weak is why it's hard to get into the tub. My 10 year old son came to my last MD doctor visit with me (because of similar symptoms) on an informal visit. My doctors think I have Bethlem Myopathy in part because of my sons hyperflexable joints,which is not a symptom of Bethlem but is a form of something called Ulrich Congenital Myopathy and these two diseases have gene mutation in common. Going to a MD clinic is your best way to get some answers. Bless you in your findings, Mary

     
    Old 12-31-2007, 12:18 PM   #5
    michigani
    Senior Veteran
    (male)
     
    michigani's Avatar
     
    Join Date: Dec 2004
    Location: Michigan
    Posts: 538
    michigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB Usermichigani HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Hi again Hoppy,

    Mary just answered a lot of your questions but I'll throw my 2 cents in! Limb-Girdle (and some other types of MD) primarily affect the stomach, waist, pelvis and thigh muscles first. By far, my quadriceps are affected worst. These are needed to climb stairs and to get up from the floor or chairs. (Mary just described my exact symptoms and we are the same age...incredible).

    The muscles in the front (anterior) of your legs keep a healthy person from swaying backward because when they contract, they pull you forward. Inversely, the muscles in the back of your legs pull you backwards, preventing you from leaning too far forward. I always sway unexpectedly backwards because of weak quadriceps and shins. My calves and hams are mush less affected.

    In addition to what Mary said about stairs, part of the reason going up is harder than going down is simply...gravity. Gravity fights you going up but assists you going down. Unfortunately as MD progresses, going down becomes frightening because it's hard to overcome the inertia of that 8" controlled drop! I am at this stage currently.

    Sit-ups and leg lifts: These functions are both performed by the iliopsoas muscles, also called hip flexors. These muscles are attached at each side of your belly button and about 6 inches below your hip joint at the front of your femur. So you can imagine, if this muscle goes out it's very hard to sit up or lift your foot off the ground. Again, I am going through this stage right now.

    You will find yourself compensating a lot. This is, changing the way you do something because the normal method doesn't work any more. At this point you may start to feel self conscious. I wrote a thread about compensation a while back. What's scary is when the compensation stops working!

    My 2 best pieces of advice are: keep a positive attitude. (There are great advances in research right now). And, visit your local MDA clinic. They are the experts.

    Keep in touch,

    Mark

     
    Old 12-31-2007, 09:05 PM   #6
    hopalong_too
    Senior Veteran
    (female)
     
    hopalong_too's Avatar
     
    Join Date: Aug 2005
    Location: Washington
    Posts: 790
    hopalong_too HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Thank you so much Mark (again) and Mary! I was always the athlete,swimming and running (although never great at the running. I have been thinking back and my arms are strong in the water but my kick is weak. I had never thought of that before. I can easily make the length with arms only but it is much harder with legs only! I used to be able to just hoist my body from water to side of the pool but I can no longer do it. That was a shock!

    Is there a way to differentiate weakness from out of shape? I am worried that if I talk to the doctor he will just tell me I am out of shape. I have already been told I "look" normal and it took years to get the hypothyroid diagnosis because I didn't "fit the mold"! I guess that is why I am leary to bring it up. Number 1 is because I am hiding it and number 2 is because I have a big fear of being brushed off and not taken seriously! I will talk to my doctor in January.

    Thank you once again. I will continue to read all of your posts! Happy New Year! Hoppy

     
    Old 01-01-2008, 10:56 AM   #7
    Madalot
    Senior Member
    (female)
     
    Join Date: Mar 2003
    Location: Virginia
    Posts: 265
    Madalot HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Hello Hopalong!!

    Sorry I didn't post sooner, but I've got a nasty cold right now and they usually hit me like a ton of bricks. Feeling a little puny at the moment!!

    It's amazing to me how so many of our stories are so similar. Mine kind of goes like this --

    As a child and teen, I was always the slowest kid and sometimes called a weakling. But, nothing was severe enough to warrant any notice.

    In my 20's, I made up my mind to get in shape. Yes, I believed I was just "out of shape" due to being lazy and not wanting to exercise. Think I heard that from some friends and family? Better believe it. Anyway -- I got an exercise bike and set out on a very intelligent regimen to get myself in shape. I started out slowly and did not push myself too hard at one time. I set realistic goals for myself and was sure I could do it and would be riding 20-30 minutes quickly. After 6 weeks, I was never able to ride more than 5 minutes before it was just too much for me. At the time, I said to myself that something wasn't right -- it couldn't be right. But, no doctor was going to investigate based on that. So, like so many others, I hid my weakness, was embarrassed by it when I couldn't hide it, and simply compensated for it wherever I could.

    When I was in my mid to late 30's, I went to see an orthopedic surgeon to evaluate me for possible surgery to fix two herniated cervical disks. Little did I know that this doctor would be the turning point for me and my search for answers to my weakness problem. During his examination, he felt that my arms were much weaker than they should have been. He started to question me, asking if I was noticing any increased weakness, to which I answered no. He asked me if I had trouble going up and down stairs or getting out of low sitting chairs. I told him I did have trouble, but it wasn't anything new. I also expressed that I felt my problem with chairs and such was my weight (when I hit 30, my weight started increasing a lot and since I couldn't really exercise, it became kind of a problem). He asked me to sit on a foot stool and try to get up. I immediately got anxious and begged him NOT to make me do it. He was so nice and said it was really important for him to see the problem and he promised to help me up if I needed it. Once up, he proclaimed "there is definitely something wrong with you. You should not be having that kind of trouble getting up from a stool" and I again expressed that it was because I was so heavy. He said very firmly that it was NOT my weight. He said "I don't know if you have Muscular Dystrophy or what, but you need to be thoroughly evaluated by a Neurologist." He said he wouldn't touch me until after that was done.

    That appointment was when I began to realize that something really WAS wrong. I spent another two years seeing Neurologists (more than one), undergoing tests and finally got a diagnosis of Muscular Dystrophy, most likely Limb-Girdle MD. My CPK levels were in the 1500's and my muscle biopsy showed abnormal muscle tissue (I'd have to look it up to remember exactly what they said). The doctor that read the muscle biopsy gave Limb-Girdle MD as one of the possible diagnoses.

    Now, I'm in my mid 40's and while I can still walk, it's a major struggle. I was able to get a powerchair over the summer and that has made a big difference for me when going places like the mall, church and outdoor activities.

    I'll try to post more another time. One of the things I've found is that when I get a cold, it usually hits me much more severely than my family and I feel worse and stay sicker longer than they do. I'm kind of tired now and need to go rest.

    I look forward to seeing more posts from you. There's a lot of very kind people here that have or are going through what you are. You'll find a lot of good support here.

    Kathy

     
    Old 01-01-2008, 02:02 PM   #8
    hopalong_too
    Senior Veteran
    (female)
     
    hopalong_too's Avatar
     
    Join Date: Aug 2005
    Location: Washington
    Posts: 790
    hopalong_too HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Kathy, Thank you so much for your wonderful reply and for sharing with me. I hope you start to feel better soon!

    I still have the feeling that I am out of shape. I get so tired by mid day that I take a nap almost every day (could be thyroid related). I have noticed that my arms strength although still good is not what it used to be. I have trouble with strength to open jars and it is very difficult to do a push up. I have not been able to do chin ups for as long as I can remember! I always ask for help carrying groceries in from the car. I was carrying a big pot of water the other day and was taken by surprise when my whole arm started to shake with little control because of the weight. I have joined a gym for my hubby and myself as a Christmas gift. It has a pool so at least I will be able to get exercise that way. I want to try the leg lifting machine to see if I can do it but I will wait until no one is around so I won't be too embarrassed!

    As I mentioned, I can still climb stairs but need to hold the railing most of the time and I can still get up from chairs, holding on most of the time. We have two chairs in the family room that I bought second hand that I call the "old people" chairs. They are stiffer with good arms. I like to use those even though I don't really consider myself the "old people" just yet! Getting up from a squat is very difficult however. I can still cross my legs when sitting. Is that something that gets more difficult to do? Or an issue for anyone at the beginning or farther along? My legs do not hurt but they seem to ache a lot of the time especially when I am sitting from pelvis to knee. In the morning, they feel like a dead weight when I am lying in bed and haven't moved yet. I always wake up and wonder if they will hold me up today. I have said for a very long time that we should look for a ranch house (bungalow) as we are in a two storey house now. Maybe that is subconscious thinking.

    Sometimes when you want to know but are too scared to know, excuses are sought. I think I would feel better if like you, I had a doctor notice something instead of me bringing it up and not being heard. Is there anything that I can check, myself, things that I can or cannot do that will give me more confidence to seek help? I have not seen that anyone on the board has had a problem with the aching and/or dead weight feeling. Also I seem to be developing something resembling wads of fat just above my patellas but off to the side a bit where there used to be very developed muscle. It feels like mush!

    Again, I want to thank you all for your time and patience! Kathy, I hope you start to feel better really soon. I will try to get up the courage and confidence to ask my endocrinilogist about it in January. I know he is probably not the right doctor but I have to start somewhere. I did ask him about a concern unrelated at my last check up and he brushed my concerns off which struck a blow to my self esteem, ego and confidence. I do like him though so I will possibly try again. Hoppy

    Last edited by hopalong_too; 01-01-2008 at 02:16 PM.

     
    Old 01-04-2008, 10:18 PM   #9
    kew17
    Junior Member
    (female)
     
    kew17's Avatar
     
    Join Date: Apr 2007
    Location: San Antonio, Texas
    Posts: 29
    kew17 HB User
    Re: Can someone PLEASE let me know what their "initial" symptoms were?

    Hi Hopalong!
    Sorry for the late reply. We've had family in for the Holidays and well...now the cleanup begins. lol
    My story starts that as a teen I was diagnosed with scoliosis (curvature of the spine). I wore a brace in middle and high school and although the S curve was still there, outgrew the brace and went along with life. It is only hindsight that we now see the scoliosis was as a result of my MD (limb-girdle) and not the cause of my problems. There are alot of hindsights, such as I always had trouble in gym class being able to keep up with my peers. I couldn't do a sit up for the life of me etc. My mother remembers the doctor always making a remark that my urine was extremely high in protein, but it was never pursued further.
    At 34, I became pregnant for the first and only time and had a normal pregnancy with my only problem being high blood pressure. Within 4-6 months after giving normal birth, I began having difficulty walking across a room without falling and had trouble getting up from the sitting position. A close friend also commented that I looked like a duck when I walked. After seeing a photo taken of me, I saw the outswing of my leg that she was referring to. I also remember always grabbing my pant leg or leg to lift it into the car when I was driving. But back then I never paid much attention to that. I also remember one time getting into the tub/shower and dragging my leg across to get it in and my husband commenting that I needed to get looked into as he thought I had MS or something. Whatever I thought and how rude of him.
    Anyhoo ~ my problems were worsening and then after a terrible bout with the flu, my right lung collapsed for no apparent reason. It did it again 6 weeks later and they operated to fix it. A year after that the doctors were hoping I had Polymyositis and put me on a very aggresive Prednisone treatment as well as some other drugs for my blood pressure etc. I was on my way to the doctor for a checkup and started experiencing terrible chest pain and couldn't breathe so we stopped at a fire station and EMS took me in from there. I had congestive heart failure and spent some time in the hospital and then got pneumonia again. If it was the Polymyositis, the Predisone would have helped the symptoms, but that was not the case and they then did a muscle biopsy to determine the MD.
    So, at this point, the MD has rapidly deteriorated my lung and heart muscle and it seems I get pneumonia at the drop of a hat. I fought like heck, but it was about 2 1/2 years after the initial major symptoms that I became wheelchair dependent. Which changed my life for the better. I am able to live much more independent and do many more things with my power chair than I could before. Last year we went on a trip to DisneyWorld. Well, the day we got there I became ill and was hospitalized for 3 weeks with pneumonia and it wouldn't go away. I lost alot of remaining strength that I had and now cannot walk too much at all. I can take baby tiny steps with the walker, but that's just to get to the commode.
    I would like to reiterate what Mark and the group has recommended, that you contact your local MDA. They truly will assist you any way they can. It is a great group of folks. My prayers and best wishes are with you.
    kew

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    What were your initial symptoms k2626 Multiple Sclerosis 23 03-03-2009 01:09 PM
    Initial Symptoms gbxbeq1 Parkinson's Disease 7 05-30-2005 11:52 PM




    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 03:50 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!