Muscular Dystrophy Community
new here, neuro says "you're healthy, check into muscular dys...
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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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new here, neuro says "you're healthy, check into muscular dystrophy"

History:  I am a 37yo female being seen my a neurolgist to rule out myasthenia gravis and MS. Both of those have now been ruled out and he has no further ideas for me. He did mention yesterday "you may want to see about getting into a muscular dystrophy clinic". I know nothing about MD and to the best of my knowledge no one in my family has had it. Sharing my MS-board post here for your thoughts. Thanks : )  

I had my second visit yesterday to my neurologist (first visit was two months ago, haven't seen him since). He said that my MRI is normal, and the EMG "abnormality" was actually fine too. He used phrases like: "well you could get on the waiting list for the muscular dystrophy clinic", and "well we could do a muscle biopsy and see if it shows us anything". It just felt like he was feeling his way through the dark, and pulling me along with him. He wished me well and sent me on my way.

The information I presented to him, along with dialogue, looked like this:

DAILY SYMPTOMS: Blurred vision, eye pain, muscle weakness when walking, low libido, memory loss / cognitive issues, heat feels terrible and makes symptoms worse.

WEEKLY SYMPTOMS: chills, dizziness, brain fog

EVERY 2-3 MONTHS SYMPTOMS: "buzzing" legs feet hands, unsteady walk and afraid of falling.

The neuro explained that the MRI of my brain and cervical spine was normal. "If there was something neurological going on it would have shown up by now."

But dam*, whenever I walk more than a few blocks I pay dearly for it, in all kinds of ways! Blurry eyes, seized up painful leg muscles. And if I *really* overdo it I wind up feeling depressed afterwards.

I'm trying really, really hard to remain peaceful in this. But I am feeling lost.
3 Comments Post a Comment
I am so sorry for the delay in response! My arthritis has been acting up, and I have been unable to type.

The above symptoms could stem from virtually anything...sorry to say.
I'm surprised that your doctor didn't just tell you it was anxiety and send you on your way. Be thankful that they have actually done some testing on you.

These symptoms can be caused by anxiety, peri-menopause, muscular dystrophy, etc.
The only way to rule the MD out would be to have the biopsy done.

Have you had your ears looked at? Silly question I know...but imperative.
Inner ear issues can cause some of the symptoms you can sinus infections.
Have your eyes tested as well...and perhaps have your teeth checked as well...problems in these areas can cause eye pain and dizziness.

I went through the exact same symptoms as you. I was diagnosed with several different "diseases".
Half of the symptoms were due to the peri-menopause...some were related to arthritis...and the unsteady walk, and dizziness, were symptoms of Menniere's Disease. This is a "disturbance"  of the inner ear... excess fluids. I was also diagnosed with having a weak right ankle, and given a brace for it.
The geneticists however, tell me ( and my whole family ) that this is NOT the cause of all my/their problems, and that we all have some sort of a muscular dystrophy that has no name for it as of yet.
They have been monitoring us closely for several years and have noted that we all have muscular deterioration...but try and get a doctor to acknowledge that. The only testing done now is by the geneticists...but they apparently do not diagnosis...they simply study. So although it's been proven by my brother's biopsy ( albeit that they say that the specialist gave him the wrong diagnoses...not the type of dystrophy that he claimed it was ) and the yearly testing on the rest of the family that there IS something wrong, our family doctors won't send us in for further testing...nor will they refer us to the right clinic.
Ask your doctor to refer you to an MD specialist. Have the biopsy done. Hopefully you don't have it, and hopefully they will tell you what is wrong.
As for family can jump a generation or two. Was there a great uncle ( or someone else ) who was deemed as "lazy"...who avoided work...claimed to be in constant pain?
"Back then" people with those symptoms were labelled as "lazy" etc.
Some forms are carried by women only, and only the men are affected.

If you need more info, don't hesitate to post again.
Have you been checked out for Lyme Disease yet?  It can cause all of the symptoms that you describe.  It is also rampant in WI. Up to half of patients test false negative on the blood tests, including me.  

I encourage you to come post on the Lyme Fisease forum for more info.
I have the same symptoms.  If you have alot of pain that goes with that, you might mention syringomyelia.  
this is a rare disease.
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