Tonight we went to see a movie. "Charlie Wilson's War". A great movie! We parked the car and headed in to the theater. There was a curb. I saw the curb but must have misjudged it!! Thank goodness I was holding my hubby's arm! I tripped on the edge, I just didn't lift my leg high enough! He kept lecturing me about how I have to watch where I am walking! Believe me, I do watch! Then he said it is dark in the theater. I know that so I held on for dear life although he doesn't know it is for dear life! I really must be more careful! I am sitting here typing now and worrying and my legs are aching, only from the knees to hips! Why? The more I think about this, the more I remember about muscle weakness. I know Mark says there is no pain. This is not pain but more of an ache, a weariness, a heaviness, a feeling of things not being right. I'm sorry. I am feeling like I have no control! I feel as if things have progressed too fast! I guess it is when the compensation doesn't work and you KNOW something is different! Maybe it is just a thyroid issue? I am continuing to take notes. I really need to hear from others! Thank you so much for this board! Hoppy
Here I am again! Curbs were one of my early fears and symptoms. I became afraid of them. I was still trying to hide my symptoms from my wife and co-workers. I would approach a curb in fear as we would cross a parking lot. I'd think, "God, PLEASE don't let me fall down here". How would I explain it?!!!
I started to accept the fact that I was more than out-of-shape once large people and old people were passing me on the stairs. I new I had to find out. Heavy people and older people can get out of folding chairs and step up a step stool. I couldn't.
Your local MDA clinic are neurologists who are experts specifically in muscular dystrophy. I hope this isn't your problem but if it is, nobody would take better care of you then your MDA clinic.
Now...I know this is hard, but let me offer you a bit more advice. I went through this. Sit your hubby down and tell him you're worried about these symptoms. And that you'd like to talk to a doctor about them.
Worst case scenario is that your fear will be confirmed. Nothing will be different...you'll just know. Then, once your family, friends, neighbors and co-workers know, it becomes SO much more relaxing. For me, hiding the symptoms was the most stressful and frightening part of the whole diagnosis.
You don't have to take my advice. I'll understand. But think it over. I'm sure my other "buddies" on this board will agree. Common ladies, (and gents), help me out here! Good luck Hoppy,
Mark is so right! The only person you are fooling and hurting is yourself. My walking was weird and I thought no one noticed, but they did and when I told them what was going on, everyone understood and they were more than helpful. Even though sometimes I don't want to help. I fought everything the cane, the handicap parking pass, the wheelchair but I realized I was only hurting myself and my kids. I now I proudly ask for help or use mobility devices, it does free you and your mind because Im probably sure you're wasting a lot of time trying to avoid certain situations, we all have. Go see a doctor, it will be the best thing that happens to you as well as the most scariest thing.
Having read the few posts you've made recently, everything you describe sounds exactly like muscular dystrophy. Yes, curbs are an issue. As my condition progressed, it became not just curbs, but really any uneven surface (grass, gravel, sand, snow, etc.).
I can relate to everything you describe in the movie theater. Not being able to see well makes it even more difficult to keep one's balance, and I have had some scary experiences walking up the steep (to me, at least) incline to leave the theater at the end of the movie.
I understand the temptation for you and your husband to try to dismiss it as nothing, but I think you will feel better if you do see a neurologist, because not knowing what is happening can be the most scary part of any health problem.
I have been reading all your posts for a few days now.
I'll be 62 in about a month. My dad had a disease like ours and he died in '93 at 83. So I was 47 when he died--In my late 30's when he was diagnosed. I wasn't concerned about it passing to me because I was told that if it was hereditary, it skipped a generation..and.. NO one else in the whole family had anything like he had.
His diagosis was Polymyositis.
I have doubts about the diagnosis because it was in a very rural hospital/doctor situation. His symptoms were very close to mine--LGMD. The steroids didn't work for him and he just gradually lost all of his muscle control. He even had to have a feeding tube the last couple of years of his life. He was a very active, physical man all his life. A real "John Wayne".
I watched him deteriorate and felt like there must be some kind of therapy for him.. but ....we know the answer to that.
About 5 years ago , I started noticing weakness in my legs. For thefirst 20 years of my working life, I had a very physical job. On my feet all day and walking a lot. Never had any problem with my legs.
The last 20 years has seen me behind a desk.. So, I just figured I was out of shape when I noticed I was having problems.
When I tried to discuss it with my Primary Care Dr, he just sorta dismissed it.. " I can't give you any pills for it." I don't know what it is".
Finally, a friend told me the name of a neurolgist to see. I had to tell my PC Dr to give me a referall to THIS DR.
So- to shorten this long story,, I have been diagnosed with LGMD.
I can't say I'm glad there are others out there in my same situation..I wish NONE of us had it! But,, since there ARE more people out there like me, I'm glad I've found you.
In reading all the posts , I guess I'm not as advanced as most of you. I have had the "falls" and the apprehension about going out where I know I will have a problem getting out of a chair. I'm very careful walking anywhere I'm not familiar with the terrain.
I look forward to chatting with all of you soon.
You are all SO wonderful. My husband is not dismissing it as nothing. Although he loves me and cares so much for me, at this point I don't think he is at all concerned that there is a problem other than me being TOO CLUMSY! He is constantly after me to WATCH MY STEP! I do complain to him about tiredness and muscle aches but that is it. I want to be more convinced within myself so he won't think I am "crying wolf" when the discussion actually comes up. I was quite aware last night as he sat on the sofa that he was watching me climb the stairs with the help of the handrail. I could even still do it without the handrail most of the time but just feel more steady with the extra help. Mark, I will have the discussion with my husband but the circumstances need to be right. Maybe the next time I start to fall and he thinks I have had too much to drink (It wouldn't be the first time I was accused of that )
I did call the endocrinologist and spoke with the nurse. I started to explain about the weakness and the muscle aches etc. and she said maybe my Vitamin D should be retested. I just don't feel that is the issue but I will have it retested. This has not been any better as my Vitamin D level rose back into the normal range. I guess I will have to bring up the subject again at my next appointment.
The problem I am encountering is that I "look" normal. What is normal??? Walking looks normal except for a slight sway back especially when I get tired (which doesn't take long). There is no change to my face or my body structure, if you know what I mean. I do not fall over every 5 minutes or anything! It is just a slow weakness that is growing and I can't seem to get that across. I have mentioned it to other doctors in the past and have been told-----depressed, menopausal, anxious etc. But I am definitely not depressed, hahaha...possibly menopausal but that is really not an issue and anxious only because I need to be heard!
I don't think people just "walk" (waddle) into the MDA office and say, "I think I have a problem, do you have a doctor I can see?" Wouldn't a doctor have to be suspicious enough first and run some tests or everyone with weakness issues would be banging the doors down.
Thank you all for your responses and your patience with me. Just hearing from you all relieves some of the anxiety. You are all an inspiration! Hoppy
Hoppygator, I just finished posting and saw your post. Welcome! I have not even been to a neurologist yet! I am still trying to get someone to listen to me! I have mentioned it to my family doctor and lately a naturopath and was told, "You sure look fine to me. Just relax and stop worrying". You know how that is. PLEASE can you tell me about some of your initial symptoms, subtle and not so subtle. Did you start noticing things five years ago? Where are you at now? Do you use a cane? A wheelchair? Did your hips and thighs ache at the beginning? Did they feel like a dead weight sometimes? Please share! There are wonderful people here and they understand.
Last edited by hopalong_too; 01-03-2008 at 08:16 AM.
Yes, appearing "normal" is the problem that many of us face. This is why people are so confused when they see us struggling to climb stairs or get out of a low chair.
The most difficult thing is that there are so many different types of muscular dystrophy, and then even two people with the same type can have very different and unique symptoms and progressions. I was diagnosed with MD at age 6 (after my mother *insisted* that they perform tests because she knew something was wrong, despite doctors saying there was nothing to worry about), and it took until I was 19 years old to get my exact diagnosis of LGMD-2A. And, of course, even this is not 100% certain.
If you have insurance you should just look for a reputable neurologist and then have your Dr give you a referral to him/her. At least you'll have a starting point. My first neurologist diagnosed me with IBM. Then he told me I should get a second opinion and gave me a referral to the professor of neurology at the University of Florida. Thats where my diagnosis of LGMD came from.
Now to your questions..
First symptoms- I felt exhausted on vacation in DC. But I thought I was just out of shape. We were walking a lot in July in intense heat. I had trouble getting up the steps at the Lincoln Memorial. And older people were passing me walking in Arlington Cemetery. After that, I just kept noticing the weakness and fell a coupleof times. That was in 2002. I didn't get the diagnosis until this last May (2007). It seems that the symptoms have progressed more rapidly in the last year than in the four years since I started noticing it.
I am walking ok. I was reluctant to get my handicap permit or use a cane. My Dr asked me how I get off the john or out of a chair. I told him I have to push myself up with my arms/shoulders. He then asked what I would do if I fell and broke an arm, wrist, etc...Thats when I started using the cane.
Compared to most of you guys, I guess I'm still pretty mobile. I still drive ,, I don't use the cane much at home where I know the terrain and I can hold onto someting. But I'm really apprehensive about falling in public. My only falls have been at home,,so far.
Aches and pains...My legs, hips, lower back muscles feel just a sore tired feeling unless I have been over-doing things. Then, they ache- especially in bed. Not sharp pain, just dull ache.
I know it's a bad disease, but we all have to realize--there are sooo many people out there with more agonizing, fatal diseases than we have. It could be worse gang.
I hope this info helps you Hoppy, --or anyone else.