Hi I wrote you a private message, not sure if you got it. Check my profile and email me...

Thanks janel

I've known or suspected I've had some form of MD for some time. About 30 years ago my CPK level shot up to 42,000. They susgeted I take some blood tests and do a muscle biopsy. Sure take a slice! and so they did. I was dx at the time with one of three possibilities: Mitochandrial Myopathy, Limb-Girdle MD or Fasci..whatever MD. They said int time the symtoms would determine which it would be.

The first has been ruled out...pheww. This week I shall be teted for the latter but doc has strong doubts it is fascio as i can still suck on a straw and blow bubbles. Can't whistle but never could.

More than likely it is LG as I am showing all the symtoms. I can walk but not far as after about 3 house distance by legs are ready for a nap, I'm getting more and more unsteady on my legs and have fallen or tripped more times than I can count.

I know a chair or scooter is not far but want to stay on my legs as long as I can as I know once I start using a scooter I won't walk again.

what are the very first syptoms of Limb Girdle MD? and, Is it a very subtle thing for quite some time?? I have had (sometimes, not enough to even think about), but fairly regular stiffness and weak sensations in my legs, mainly the calf area, and the ankles, but felt like maybe it's only due to aging and never exercising. However I wonder if it is more than that. When I read about people who have discovered they do have some type of serious illness such as MD and felt like there was something wrong long before they were diagnosed it makes me want to ask questions about my own possible symptoms. If there is nothing really wrong with me, I hate to be worrying about it but if there is, I don't want to wait too long to try and do something about it if possible. ANY helpful information would be appreciated. and Thank's in advance, Pam

Reading all the msgs I sems like we all have similar to exactly the same symtoms. Pam is you suspect you have a form of MD I wouldn't worry about it. If you do there isn't a whole lot you can do about, just enjoy the time you have on your feet for as long as you can.

As I mentioned above I was dx over 25 years ago but hadn't really affected me until about 10 years ago after I was hospilized from a blool clot in my legs. Since that 10 days stay in the hospital my legs seem to get weaker and weaker.

As of now I don't go anywhere without a cane. I applied for a scooter but Medical witll only offer one if you are home bound and even then its difficult. They gave me a walker but i won't use it until it is absolutely ncecessary.

by all means write and I will reply and share with you whatever you would like. I've found sometimes we learn more from talking to one another than to doctors.

God bless and Merry Christmas to eeryone
John2

my name is Buddy and i was first diagnosed with LGMD while i was in my 7th yr of a military career including being a paratrooper with two tours in Nam. My disease has progressed slowly up until about six yrs ago and now i have a lot of weakness and cramps and pain. My family dr. dies last month and i am at a complete loss as to finding another dr. to help manage this. I realize that I can't be fixed, but it sure would be nice to find another Dr. who understands treating these symptoms and helping me keep a somewhat mobile way of life without constantly dealing with pain and weakness. So far the few I have seen are too scared of the DEA to pick up where my family physcian left off even though I am rated 100% by the VA and Social Security and have all the medical records available. if anyone has any suggestions of where to start searching for a Dr. to help me maintain what quality of life I still have; it would be greatly appreciated. The doctors seem afraid to treat me because none of them are familiar with LGMD.
I would love to hear from anyone with any tips or suggestions.

Hello everyone,

My son was diagnozed with LGMD in 1998 at the age of 11. We knew that he always had trouble running and had leg aches when small, but didn't think much about it. A school nurse was doing routine range of motion exercises with the children and realized that my son could not perform many of them. We took him to a local doctor and he suspected MD immediately. He had a biopsy in Denver, CO and showed positive for MD. We were told, at that time, that he had a mild case and he would be fully functional and probably never in a wheelchair. However, as he reached his teenage years his muscles began to weaken drastically. He had hamstring and achilles extensions in 2004. This helped with toe walking, but caused permanent adema and further weakness. He had very little upper body weakness until the last couple of years. He's now 21 and in college. He uses a scooter most of the time and can only walk short distances. He has a positive attitude and is an advocate at the university for kids with disabilities. His only treatment is PT. This is a difficult disease and my heart goes out to all of those afflicted with it. Hopefully continued research and breakthroughs will be found for this muscle eating disease. I hope this helps.

Talking for myself it seems for me the best treatment was to ignore it for as long as I could. I was dx in 1990. It wasn't until 10 yeres later that I felt the total weakness of the muscles. I am now going on 67 and am still able to walk with a ane...but nor far.

I suspect by this time next year I will be joining the scooter crowd. God bless us all.

I wonder if any of you could help me. My brother has autism, and my family and I are trying to find the cause of him developing an abnormal gait. Please read about his symptoms, and let me know if we need to investigate LGMD.

After doing a considerable amount of research and consulting with physicians for almost a decade, my family has not been given a cause for the development of an unsteady gait in my brother. His health condition is undoubtedly complex, so I am aware that no definitive answer can be provided via the internet. Nevertheless, an absence of answers or directions necessitates that I use any method available to acquire help, because my brother's condition is steadily declining.

My brother was diagnosed with autism and moderate mental retardation as a baby. The doctors gave him a poor prognosis, but he made dramatic and unexpected developments in childhood and adolescence. He learned to independently execute household chores, cook a plethora of meals, participate and excel in basketball, and develop an exceptional talent for video games. He also displayed dramatic improvements in social skills and made friends as an adolescent (in spite of limitations in verbal communication). Cognitively, my brother is on the level of an elementary student.

After my brother turned 21, my mother and I began to notice changes in his fine motor capabilities. The first sign I noted was he was unable to stir a beverage due to pronounced hand tremors. Therefore, his physicians initially suspected a medication induced parkinsonian-like condition (They initially suspected Depakote as the cause). His medications were altered and reduced over the years, but his condition is steadily deteriorating.

My brother is now 30, and he walks with an abnormal gait. He now has a pronounced backwards lean that makes him prone to falling backwards (I would estimate that he leans at a 30% angle that increases upon fatigue). When he walks, the leans backwards and takes giant, heavy steps, and his lack of fine motor movement causes him to have difficulty eating foods without spilling them. His backwards lean while sitting causes him to constantly readjust his body to prevent sliding out of a chair. However, no abnormal movement is noted while he is sleeping, and he is able to slightly straighten his posture upon attempting to run a short distance. Nevertheless, his condition has taken away much of his stamina. Like many people with autism, he has some OCD tendencies which include continuously touching objects. Before this onset, it was impossible to visually identify my brother as having a developmental problem unless you spoke with him.

My brother is now in a group home, and he has access to a team of physicians who have been unable to diagnose his condition (He has access to physicians at Duke and UNC Chapel Hill). Although he now wears a back brace, he has experienced two falls within the last six months. I also believe he is having frequent headaches.

I am providing some additional information that may help:

* He was born premature.

* My brother also was diagnosed with bipolar disorder after entering puberty. His bipolar disorder became increasingly difficult to manage at home, and his manic states increased in severity over the years. The rapid cycling steadily increased until his early twenties, and they are now less extreme.

* He had an MRI a few months ago, and the results were normal.

* He takes an array of medications for bipolar disorder including Depakote, Abilify, and Lithium.

* He has taken Zyprexia and Seroquel in the past.

* last year, he lost an average of 10 pounds every month, on a 5,00 kcal daily diet, until he weighed 135 to 140 lbs at six feet. No cause of his weight loss was identified. Could this be due to muscle wasting?

* He also takes Synthroid and vitamin E (Although he takes Synthoid, he does not have a diagnosed thyroid condition).

hi guys u ok?

im 15 years old and doctors think i may have LGMD!

can i just ask if any of you were diagnosed at this age? how high was the CK levels? were you diagnosed with CK levels alone?

my syptoms at the moment are severe calf stiffness and pain and also severe back pain. i also struggle climbing stairs howevers am fine at getting out of chairs and turning in bed.

also nobody in my family has ever had any sort of md before so if i do have it we do not know where the gene has come from. do you all have someone in your family with MD?

Thanks Charlotte X

Hi I am new to this but probably can give some information that might be helpful. My mother and brother both were diagnosed before me. Mother lived till she was 74 and my brother who is 54 is in a wheelchair. Mother was diagnosed at the age of 45 which seems to be the age both my brother and I both showed strong symptoms. Remember to keep a positive attitude.

What age was your mom and brother diagnosed? My brothers both showed sign at the age of 44 or so. My father too. However, I have not been tested nor spoken to a doctor about this as of yet. I figure since I am now 44 and show no symptoms - obvious ones- I'm probably fine. My question, the age in each family for limb girdle is it or is it not consistent? Have you noticed tht it may be just a few yeards off, or can it be many years before one member shows signs versus another? Thank you.

Dear Terrie
My mother showed signs when she was in her 40's and by the time she was 45 you could see subtle signs. We at first thought she had a balance problem and went to several different doctors. After no progress she was then told by a doctor that she had arthritis and the doctors really had no clue what was going on. She would stub her toe and fall really easy. This kept progressing and she finally started to show signs in her walking gate. We were finally told to take her to a neurologist and he did a muscle biopsy. I myself started to notice symptoms around 35 I am now 51. My symptoms were trouble stepping up on high objects such as stages etc. I am progressing slowly and I think my age is starting to affect me also. I still walk but do fall easily. Stairs are a real problem. All people progress and different rates and show signs at different ages. I still have a business although I have down scaled and I am thinking of retirement. I would think strongly about getting a diagnoses be cause of insurance and you will have a pre-existing condition. My brother who is 54 has progressed faster than my mother . I know that this is a long email and you probably have allot of questions. I will try to answer them if I can.

Angie,

The medical is a great concern. Must say, your details surely make me think. Your moms definately came on much later than yourself. Wow!! How are your cousins etc?? My first cousin-older than I- also has it. My other cousin is showing signs too.

Do you have children? Sorry, have lots of questions. Interesting as it is such a rare form of dystrophy. Found a page that stated there are only several thousand in the United States with Limb Girdle.
It has been many months since I read the article, so could be off just a few.
Thank you Angie. Really appreciate you sharing your personal experience with us all.

Have you run into any medical coverage issues? Physical Therapy, etc.?

No one else in my family such as cousins or aunts has the disease or has show symptoms. They think that the gene mutations started with my mother since her parents or siblings have shown no symptoms. I have two children which do not have it at this time. I so have a younger sister who does not have it. Have you visited the mdausa.org it has allot of information about muscular dystrophy. I have insurance and have not had a problem but I was covered before I was diagnosed. I have been in physical therapy off and on. Have any of you family members been to the M.D. Clinics this is their best source of care.

hi charlotte and everyone else with LGMD-
i'm a 31 year old female that was diagnosed with LGMD when i was 13. i can totally relate to charlotte. i had general weakness in my legs and my calf muscles were slightly over-developed. i also complained of being tired and hated physical education in school. as time has progressed, i have eventually ended up using a wheelchair most of the time- mainly due to frequent falling (leading to a contussion on my brain) and horrible balance issues. i use a walker whenever i am in the upright position. one of main concerns deals with my weight. i'm about 5 '1 and weigh 98 pounds. i can't seem to lose any weight and my stomach looks like i'm pregnant. i'm trying to get down to 85 or so, just to relieve the lower-back pain. anyone have any suggestions? i visit my neurologist on wednesday and hope to talk to him regarding stem-cell research - maybe i'll be a candidate - : )
anyone email me with any questions or concerns - i've been living with this disease for the last 17 years. happy to help!

ashley

one more thing folks - if you have LGMD - you're eligible for social security disability benefits and medicare insurance. i've been on it since i was 18 and it pays for everything - (including wheelchairs, remodeling, etc.) - LOOK INTO IT!

ihave MD aswell.. nice to know people r here like me ..i always wanted to talk with people like mee..soo plz guys add me soo we can talk

I was diagnosed at the age of thirteen.When I first saw a dr my mother had been getting on to me about holding me shoulders up straight.She bought me back braces to wear.The doctors thought I had a pinched nerve so they gave me a sling to wear for six weeks.Didn't help.Finally I was taken to memphis and they did all kinds of test..The the biop came and then they knew what it was..I'm now 46.I can't lift my arms over my head.I've had that problem for as long as I can remember.In the last few years I can tell the my md is progressing.I'm having trouble standing not for any great deal of time.If I hold on to something I'm ok but without it I'm in constant pain..Because of being un able to do a lot I have gained weight and that's not helping at all.My breathing has become more difficult because my diaphram has grown weaker.This has caused my lower lobe of my right lung to collaps.I try to do breathing excercise to help me with that.I'm afraid soon I will be where I can no longer walk.I'm more worried I guess about the state of mind I will be in once this takes place.I'm not ready by no means.

If anyone wants to talk I'm here online a good bit.It's what keep me sain...lol I would love to have someone to talk to that's going through the same thing I am.I have a wonderful family but they don't like talking about this.I've never really had any type of support.My parents told me what was wrong with me and that was pretty much it.It kinda just got swept under the rug so to speak..