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muscular dystrophy
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Muscular Dystrophy (MD) refers to a group of more than 30 inherited diseases that cause muscle weakness and muscle loss and eventually cause you to lose the ability to walk. Discuss topics including Duchenne muscular dystrophy (DMD), other types of MD, symptoms and ways to improve quality of life.

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muscular dystrophy

I have had some symptoms that sound similar to  forms  of muscular dystrophy however all the advice I have seen seems says to rule out other possible disorders or diseases first I can't s find a list of the other disorders any ideas?

I  am a 32 year old caucasian female.

My primary symptom is loss of muscle tone and strength  over my whole body  more so in my legs. My inner calf in particular has "disappeared" in the last 18-24 months I can no long move onto my toes(tippy toes) with out bearing weight with my hands( I can still point my toes). My over all leg strength has significantly decreased I used to be able to use the leg press machine with weight around 200lbs now it is a struggle to do 150. I am fairly active I go to spinning classes yoga  and do a lot of walking. I have always had bad balance so i am not sure if that is a symptom but I do have very bad balance;( oh and I am pron to random cramps or spasms sometimes my hand will stay clenched and the muscle won't relax same goes for my  hamstrings, but that has been happening for a long time 10 years? and is very random

My diet is better than average( most meal I make from scratch, lots of veg and lean meat( I also take a muli vitamin)) and I definitely am eating enough protein.

any ideas or suggest would be appreciated I am going to my doctor but was interested in in having some other opinions
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209987 tn?1451939065
Muscular dystrophy is a group of inherited disorders that involve muscle weakness and loss of muscle tissue, which get worse over time.
So you have come to the right forum.
I will try to help you as much as possible.
So let's start with your symptoms and see if we can match it to our database.
{Just so you know, most are male dominant...meaning that men are affected and we women carry it.}

Females rarely develop symptoms.
Muscle weakness of the lower body, including the legs and pelvis area, slowly gets worse, causing:
Difficulty walking that gets worse over time; by age 25-30 the person is usually unable to walk
Frequent falls
Difficulty with running, hopping, and jumping
Loss of muscle mass
Other symptoms may include:
Breathing problems
Cognitive problems (these do not get worse over time)
Loss of balance and coordination

You would NOT have Duchenne muscular dystrophy, as this would have had you in a wheelchair by the age of 12 or sooner.

Facioscapulohumeral :
mainly affects the face, shoulder, and upper arm muscles. However, it can affect muscles around the pelvis, hips, and lower leg.
I do not suspect this to be your case.

Myotonia show none of these symptoms.

Emery-Dreifuss is also out. You would have mentioned having a heart attack.

Limb-girdle muscular dystrophy (LGMD) is a purely descriptive term, generally reserved for childhood- or adult-onset muscular dystrophies.
This is where they will start with you.

Myotonic is a chronic, slowly progressing, highly variable inherited multisystemic disease. It is characterized by wasting of the muscles (muscular dystrophy), cataracts, heart conduction defects, endocrine changes, and myotonia. Myotonic dystrophy can occur in patients of any age.
This is the one that describes your situation best.

Because men generally show symptoms and women do not, do not be surprised if they want to do a biopsy.
This involves removing a sample of muscle tissue from the farthest place away from where your pain/weakness is.
They will send you to a specialist to do this.
This may or may not be done the first time you see the specialist.
The first thing they will do is have you pace the floor to watch how you walk.
PLEASE walk like you normally do! DO NOT walk in an upright position if you normally walk slouched over. Do not throw your shoulders back if they are normally forward when you walk. Do NOT ( and many women do this ) walk with a wiggle in order to look sexy...seriously...this is why many women are told they don't have a dystrophy when they really do.
You would be surprised at how many women do this.
When I was initially tested I threw my shoulders back and tried my hardest to walk in a straight line. It took another 17 years before the doctors would even consider checking me for a dystrophy...even though my brother and 2 of my sons have it.  And no...I didn't wiggle. lol
They'll do many tests on you and may even send you to a genetics department.
If you need any more information, I'm here.

Avatar f tn
thanks for you thorough answer tscock , what you say does match my impression.

I was wondering if you would know what other things ( not MD things) could cause those symptoms.I figured people in this forum might have other diagnosis before learning  they had a form of MD.

As you say it is more common in men and I have no knowledge of anyone in my extended family ever having  anything that sounds like MD.

Thanks again
209987 tn?1451939065
Some forms of MD are hereditary...actually most are.
Many people have such a mild case that they aren't aware that they have it, so it's quite possible that someone in your family had it.
Seeing a geneticist can help to determine if you have one form or another and can also tell you if you or someone in your family is a carrier.
Before my brother was diagnosed, the only person that ever complained about not being able to lift things, and sat around was our Gr Gr grandfather on our dad's side.
This was one of the reasons it took so long to diagnose us...because women are generally the carriers, not the men. The geneticists had to re-think a few things about what they had already learned.

As for other diseases...I was being put through the wringer for MS before they decided that it was probably MD.
My reports are odd, in that I show more MS signs than MD signs...but I have some symptoms that CANNOT be attributed to therefore they came to the conclusion that it was indeed a form of MD.
As of yet, there is only one other family in the world that has the same symptoms as our's ( or have at least been seen by doctors )...and they are Japanese...our's is French/Austrian.

There are a few others, most of which I can't remember, that have some of the same symptoms...but because your one leg is going through some sort of atrophy " disappearing ", I would be willing to bet it's MD related.

I'm wondering if perhaps you are going through peri-menopause. They now claim that estrogen loss can deplete muscle mass.
Postmenopausal women are more at risk of this however.

Another thing to look at is Sarcopenia.
Sarcopenia is characterized first by a decrease in the size of the muscle, which causes weakness and frailty...however this comes with age...and with lack of exercise.
There may be a possibility that it could still be this, due to some sort of tissue issue.

I would ask your doctor to check your estrogen levels first. Rule things out one at a time.
They may ask you to draw a line around your leg that is losing it's mass and then have it checked once a week.
Be persistent...this is key.

Keep me posted as you have testing rather curious about this.
Avatar f tn
Thanks tschock I just got back my salivayy hormone tests and  estrogen and testosterone thought on the lower side are okay. My DHEA is low and Cortisol "depressed"  my naturopath said that these do not really match most of my symptoms except low enery and salt cravings... I have an appointment with a Neurologist  in a couple of weeks and they are going to stick things in me! yikes...
Avatar f tn
oh I forgot to add thatthe test also showed I have very low fasting insulin  from what I understand after reading your above post and using the power of Google;)  is usualy  Myotonic dystrophyaccompanied by insulin resitance?
Avatar f tn
oh I forgot to add thatthe test also showed I have very low fasting insulin  from what I understand after reading your above post and using the power of Google;)  is usualy  Myotonic dystrophyaccompanied by insulin resitance?
209987 tn?1451939065
Yes, it usually is, though they say that not all people experience this.
Good luck with your testing, and keep me updated.
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