casinogal
09-23-2008, 08:06 PM
I am still not diagnosed. Neurologist told me it was LGMD but he needed more blood tests to confirm. Got a call yesterday and the tests are not conclusive, so I am going to see another neurologist in a different city for a muscle biopsy. He is sending me to one that does needle biopsy as opposed to a more invasive muscle biopsy. I notice a big change since August, but mostly in one leg. Did anyone experience more problems with one leg in the beginning. Very hard to take all this in, isn't it. I suppose I need answers, but keep hoping he will say all I need is to strengthen my muscles.
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Madalot
09-24-2008, 11:28 AM
Yes, I definitely have noticed a bigger problem in one leg over the other. I use my left leg (the stronger one) for any steps I can't avoid. If I try to get up a step using my right leg, it just ain't happening!! I guess because I put so much strain on my good leg, it gets sore from overuse!
I guess my left side is stronger than my right because my hands are the same way. I cannot open a bottle or jar with my right hand. If I am able to open it, my left hand is the one I use (frequently I just can't get them open -- my kids do it for me). I can't tell you how many times I've been home by myself and in tears because I couldn't open the laundry detergent or a jar of sauce!! I've learned to plan ahead and ask someone to open something ahead of time in case I will be home alone!!
I feel your pain and your frustration. In my particular situation, the problems have been with me most of my life, but since I didn't realize at the time that anything was wrong, I just learned to adapt. My former neurologist said that I have been adapting all my life, so much, that I don't even realize how differently I do things!
Keep the faith and keep posting. We're all here for you!!
Kathy
I guess my left side is stronger than my right because my hands are the same way. I cannot open a bottle or jar with my right hand. If I am able to open it, my left hand is the one I use (frequently I just can't get them open -- my kids do it for me). I can't tell you how many times I've been home by myself and in tears because I couldn't open the laundry detergent or a jar of sauce!! I've learned to plan ahead and ask someone to open something ahead of time in case I will be home alone!!
I feel your pain and your frustration. In my particular situation, the problems have been with me most of my life, but since I didn't realize at the time that anything was wrong, I just learned to adapt. My former neurologist said that I have been adapting all my life, so much, that I don't even realize how differently I do things!
Keep the faith and keep posting. We're all here for you!!
Kathy
casinogal
09-24-2008, 08:32 PM
Thanks Kathy. It is helpful to know how it came on other people. Like you, I have had weakness for some time, especially with opening things. The only way I can open anything is to tap it first. Otherwise, I have to get someone to help. This has been going on for years, but I thought I just didn't have a lot of muscle strength. My right leg is stronger, but I know I am putting too much stress on it going up stairs. Just hope it holds out. I use an elastic bandage on my left knee and that helps. Without that, it hurts.
michigani
09-24-2008, 08:53 PM
casinogal,
my legs are so weak it's ridiculous. But I'm truly thankful that they still get me around (others have it much worse). Even though they don't push me out of a chair. My left leg is the stronger. Funny, it used to be the right. It's hard to really say but I'd put my left leg at 10% it's old strength and the right at about 7-8%. My quadriceps are shot! They ache often, but I believe it's because they are just being overworked. I don't think the MD actually hurts.
Mark
my legs are so weak it's ridiculous. But I'm truly thankful that they still get me around (others have it much worse). Even though they don't push me out of a chair. My left leg is the stronger. Funny, it used to be the right. It's hard to really say but I'd put my left leg at 10% it's old strength and the right at about 7-8%. My quadriceps are shot! They ache often, but I believe it's because they are just being overworked. I don't think the MD actually hurts.
Mark
Snickers60
10-22-2008, 11:12 AM
a good way to open things; jars etc. is to turn it upside down and let it rest on it's top for a bit 10-30 minutes. Most times, it opens like a snap. Its an air thingy.
Hope this little tip blesses you as it has me.
Hope this little tip blesses you as it has me.
michigani
10-22-2008, 01:03 PM
Casinogal, You are going through what I did. Unfortunately only about 2/3 of the 18+ types of LGMD have an associated protein identified and there are DNA tests for only half of those. I've had 9 DNA tests to date...all negative. That is, the test says I'm healthy.
I had a needle biopsy. The biopsy will reveal physical charateristics of a muscle disease and confirm Muscular Dystrophy, but NOT what type. In my case under a microscope, the biopsy revealed cell necrosis (dead and dying muscle cells), ragged fibers (another sign of damaged and sick muscle tissues), rimmed vacuoles (yet another sign). Also, the muscle sample can be "stained" with certain chemicals. If the sample turns a certain color they know you have a missing protein. Many, many stains and tests can be done with one biopsy. They only need a tiny piece.
My needle biopsy wasn't too bad. I was awake but in an O.R. The doctor numbed my leg deep with anesthetic (like Novocaine). He took 4 samples. The first 3 I felt only pressure. The 4th one hurt because I think he hit a spot that was only half numbed. Ouch! I stayed off the leg for a day and limped a bit (more than the usual) for 3-4 days. It was sore as if I'd been hit hard in the thigh and had a bad bruise.
Good luck and keep us posted!
Mark
I had a needle biopsy. The biopsy will reveal physical charateristics of a muscle disease and confirm Muscular Dystrophy, but NOT what type. In my case under a microscope, the biopsy revealed cell necrosis (dead and dying muscle cells), ragged fibers (another sign of damaged and sick muscle tissues), rimmed vacuoles (yet another sign). Also, the muscle sample can be "stained" with certain chemicals. If the sample turns a certain color they know you have a missing protein. Many, many stains and tests can be done with one biopsy. They only need a tiny piece.
My needle biopsy wasn't too bad. I was awake but in an O.R. The doctor numbed my leg deep with anesthetic (like Novocaine). He took 4 samples. The first 3 I felt only pressure. The 4th one hurt because I think he hit a spot that was only half numbed. Ouch! I stayed off the leg for a day and limped a bit (more than the usual) for 3-4 days. It was sore as if I'd been hit hard in the thigh and had a bad bruise.
Good luck and keep us posted!
Mark
casinogal
10-23-2008, 11:31 AM
That was a great tip Snickers. Tried it last night and it worked like a charm. What a time saver from all the tapping on lids! Many thanks.
casinogal
10-23-2008, 10:14 PM
Michigani, thanks for all that info. I was wondering what to expect from the needle biopsy, also what it would tell me. So far, all my tests are negative and I'm hoping this one will tell me something. The wheels move slowly and I still don't have a date for the biopsy. Apparently, it's only done at two centres, so I guess I will have to wait my turn. My family doctor told me I may not find out what I have and in that case, they will monitor my condition. I'm hoping for more than that.
Snickers60
10-24-2008, 05:42 PM
Told ya.........I got that GOLDEN NUGGET from old RACHAEL RAY on opening bottles. It's just kinda one of those little things in life that MAKES YA HAPPY !