Muscular Dystrophy Community
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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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Need help!

Hello!

I am 19 years old, and when i was about 7 years old my parents first noticed a skin disorder on front part of my right tigh. I was treated with basic hidrating losions and that is it. Later, when I hit puberty I noticed that my rught tigh is thinner than the left one, for about 3 cm. Later the shape of the upper part of my leg changed and it was obvious that some parts were simply missing. The skin in that area was/is almost transparent. Later on I started feeling tingling in my lower part of my right leg, below the knee and I lost sensation in that area. Same thing later happened on my right arm, but it is not as serious as my leg.
Doctors were never sure wat was the cause or the exact name of the disease. I was treated with physical terapy, but it didn't prove very helpfull.
I hope you will find this post clear, because English is not my native language. I hope I will get some diagnosis on my condition!

Thank you very much!
Tags: help need diagnosis muscle
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6 Comments Post a Comment
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209987_tn?1418913008
I'm not sure if this "deformity" would be some sort of a muscle loss or not.
I think this would be more of a problem with nerves because of the tingling and loss of sensation.

You say that the doctors at that time were unable to explain it...have you gone back to them in recent years?

Have you been checked for Multiple Sclerosis?

In order to determine if you have something like Muscular Dystrophy, they will need to do bloodwork and/or a biopsy of your muscle.

You should try seeing a doctor again, and ask him/her to send you to a nerve specialist.
You could try posting this on the MS forum and undiagnosed forum as well.

Good luck to you.

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Avatar_f_tn
I did tests for blodwork, something with those neeedles, and they said that the results were ok.
About the musle loss, they said that my muscles were atrophic, but that I also have no fat in that area and that the only way to compensate that fat is by plastic surgery, but I refused that option.
I went to physical therapy for years, and the only sign of improvement was a little muscle ''comeback'' in the middle of the front part of my thighs. After that the doctor said that there might be a slight chance of replacing the missing fat with muscles, but that never happened since after my doctor found out that the problem is not that much in mucles as in the fat, said that the ph. therapy is not that necesery.

I should also mention that my reflects are a mess. When my doctor tried to do the test with the little rubber hammer( i don't know what it is called) my leg barely moved after many tries.

Thank you very much for your answer. I posted my topic here because it is a bit hard to manage here, and this seemed like the closest to my topic. :/
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209987_tn?1418913008
Sorry about that. You've made it much clearer with this second post.
Don't be sorry about where you posted, I had only been wondering if you had also posted on those other forums as well.
You are certainly in the right place where atrophy of the muscles are concerned. lol

Are you still able to support your own weight...as in able to walk?

My brother has bad reflexes as well, where mine are over sensitive or hyper.

I'm sorry to hear of all your problems. It must be very difficult to deal with at times.
I'll help you to look for the answers you are seeking.

Muscular Dystrophy takes many shapes and forms, but it always comes back to the muscles going into atrophy. We will narrow this down for you, but it may take some time.
I'll work through this as quickly as possible for you.

The more information you can give me the easier it will be to pinpoint what it is you have.
Any test results, doctor's opinions, etc will all help.

Thank you for your patience.

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209987_tn?1418913008
I'm also suspecting that you may have peripheral nerve damage because of these symptoms as well.

Peripheral nerve damage can occur over several years depending on which nerve is being affected.
It can cause changes to the skin, loss of muscle, loss of feeling, and also a loss of balance.

I'm including a partial list of the types of Muscular Dystrophy for you to compare your symptoms to.
Let me know if any of these looks like what you are going through...it will help to narrow things down.

I don't think you have Duchenne's Muscular Dystrophy as those with this type generally can't walk after childhood. They also suffer from breathing difficulties, and heart problems.
Duchenne's muscular dystrophy occurs almost exclusively in boys, although it can occur in girls. Your young child may have difficulty walking, running, rising from the floor or climbing the stairs, or may appear clumsy and fall often. These may be early indications of muscular dystrophy.
A child with MD may learn to walk later than other children do and may exhibit signs of muscle weakness between the ages of 2 and 6. By school age, a child with MD may walk unsteadily and on the toes or balls of the feet. Duchenne's MD usually results in children losing the ability to walk by age 12.

It could possibly be Becker's muscular dystrophy ...which is much like Duchenne's but happens in later years...at the age you are now.

Facioscapulohumeral muscular dystrophy,also known as Landouzy-Dejerine dystrophy, is what my brother has.
Face, Shoulders, Abdomen, Feet, Upper arms, Pelvic area, and Lower arms are affected.  When someone with facioscapulohumeral MD raises his or her arms, the shoulder blades may stick out like wings. Progression of this form is slow, with some spurts of rapidly increasing weakness. Onset usually occurs during the teen to early adult years.

Limb-girdle muscular dystrophy:
Muscles usually affected first by this form of muscular dystrophy include:
Hips Shoulders This form then progresses to the arms and legs, though progression is slow. Limb-girdle MD may begin from early childhood to adulthood.

Distal muscular dystrophy:
This group involves the muscles farthest away from the center of the body (distal muscles) — those of the hands, forearms, feet and lower legs. The severity is generally less than for other forms of MD, and this form tends to progress slowly. Distal MD generally begins in adulthood between the ages of 40 and 60.

Emery-Dreifuss muscular dystrophy:
This form of muscular dystrophy usually begins in the muscles of the:
Shoulders Upper arms Shins Cardiac arrhythmias, stiffness of the spine and muscle contractures are other features of Emery-Dreifuss MD. Emery-Dreifuss MD usually begins in the childhood to early teen years and progresses slowly.

Again, this is only a list of some of the types of Muscular Dystrophy.









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Avatar_f_tn
Thank you very much for your effort!

I have recieved another diagnosis also. It is the third stage of Lyme disease, well, one of its symptoms, the skin ones. It is called Acrodermatitis chronica atrophicans. It matches most of my symptoms, except that my skin is not red, but it was brownish at first, and I have read that most of the people don't even remember when they were biten (insect bite is the cause). I have contacted some other doctors to ask them for their opinion and now I'm waiting for a reply.

Your diagnoses aren't exactly what I'm experiencing. My muscles are affected only on my right thigh and a little bit my arm. (at least the visible signs of atrophy are there).

Honestly, if it was Acrodermatitis chronica atrophicans, I'm not sure what to feel. It would be a relief, because it is easy treateble, but knowing that something that easy to treat caused me so many problems, irreversible ones (visible skin condition, one leg much thinner than the other one), then it makes me angry.

But still, I don't know anything for shure. I will try to visit my doctor as soon as possible.

You have also been very helpfull, so I can't thank you enough! I am very sorry for your brother. I wish you all the best!
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209987_tn?1418913008
No problem at all. Glad I could be of some ( if any) help.

I was sort of wondering about the Lyme Disease as well.
They had checked me for that many years ago, as I had been bitten by ticks twice.

Please let me know what you get your results back. I am very curious as to know what it is that ails you as well.
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