New to Board

[happiny01]

Hi Everyone!

I am so glad to have found you!

I am 32 years old and was diagnosed with LGMD in 1997. I was ambulatory until 3 years ago. The reason I found you guys is because I am having some difficulties that I do not know if they are MD related or something else. Since March, I have been having muscle spasms/twiches in my arms. I have never had these before so I see that this is alarming since I do have MD. Another symptom, that keeps getting worse, is memory difficulties. I have a problem remembering things...both long term and short term. Yet another symptom that is bizare is hallucinations upon awakening. The hallucinations do not happen all the time and I know they are not real.

I know that not all of these symptoms are related to my LGMD. But I do wonder if they are a different disorder instead of or in a combination with the LGMD. I am scheduled to see my neurologist in April. That is the soonest she has open.

Any suggestions?

[Madalot]

Hi Happyiny01!!

Welcome to the board!! It's interesting that you bring up some of these issues. The muscles twitches I have experienced on occasion, but not enough to warrant any investigation for me. The memory problems I have also noticed, but I have been attributing them to my age.

What I find really interesting is the hallucinations! For years, I've had what I always called "night terrors." Mine usually occur shortly after falling asleep and can be really terrifying!! Like you, I know they aren't real, but they still sometimes scare the garbage out of me. They tend to be worse when I'm stressed or upset about something.

I have absolutely no idea if these are related to the MD. The muscle twitches seem more likely to be MD related than the other problems, but I honestly do not know.

Have you asked your doctor about any of this?

[COLOGAL]

Hi there!
I am 47, and have an undiagnosed form of lgmd. I get terrrible muscle spasms, usually when I'm resting. They are not painful but soooo anoying. Sometimes so severe I cant sleep. You can actually see my muscle twitching underneath my clothing. Most of mine are in my legs or glutes. I tried vitamins and making sure I was getting enough water (2 possible causes according to some on-line info I found). My pt and doc say its more likely caused by "over use" of that muscle at some point during the day.
Have you noticed any connection between your twitches and how active you were that day? I even suggested to my doc that maybe I try muscle relaxents but he didn't buy off on that for me.
I'm sorry you "found" us because you were having problems, but boy am I glad you found us. I only resently found this board and it has made a "HUGE!" difference in my life. I felt soooo alone, sooo different. I often felt my "symtoms" seemed "in my head" because they didn't make sense to even me. This board, these people, are truley a Godsend to me.
welcome, I hope you find the peace of mind here I have. You like all of us are unique in your own way, but you are NOT alone.

[michigani]

Hi happyiny01,

I am also 47 with an undiagnosed form of LGMD. I was diagnosed at 41, but "knew" I had MD at about 39. I am walking with a walker outdoors and a cane indoors. Chairs and stairs....forget it!

I too have had slight muscle twitches. Mine are mostly in my quadriceps. It's unsettling and uncomfortable but doesn't bother me enough to do much about it. The twitches occur maybe 4 times a year, often in the evening sitting down. They'll bother me all evening then be gone in the morning.

The hallucinations, etc are likely something else, but I won't promise. I'm glad you found us. You've got a group here that understands and shares your hopes, worries, and frustrations.