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Headed to another Dr. Quick atrophy , bad twitching
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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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Headed to another Dr. Quick atrophy , bad twitching

Hi , Ive had chronic pain for years but some unusual symptoms started a few months ago. Some skin tingling , than more than usual pain ( have had back surgery was sucessful ) have had EEG and lots of blood work all normal. Only thing have not had is muscle biopsy which I will be getting. Two nurologist feel confident no herniations , no ms or ALS..

Most concerning symptoms is in a month time lost so much muscle especially in neck and shoulder , ribs and calfs. It seems like the twitching is just eating up muscle. I'm a sturdy girl and surprisingly muscular for soneone with such bad nerve pain for so long.  I have been a smoker for yeas plus on many medications. This new muscle wasting has only happened once in one location and that was when I herniated 3 disk.

That's the confusing thing , test normal and no loss of major strength. My eyes are bit tired but I feel like its from too much computer  and tv right now.

Any thoughts. There's only lupus in the family.
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209987 tn?1451939065
MS would have been on the top of any doctor's list given the details.

Sounds like you definitely have some sort of atrophy going on, that's for sure.
Now we just need to figure out why and what it is.

I'm assuming they checked the thyroid?

Other things to consider are:

Guillain-Barré syndrome, a rare nerve disorder that causes weakness in the legs, arms, and other muscles and that can progress to complete paralysis.

Myasthenia gravis, a rare, chronic disorder that causes weakness and rapid muscle fatigue.

A problem with the minerals (electrolytes) found naturally in the body, such as low levels of potassium or sodium.

Alcohol associated myopathy
Amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)
Dermatomyositis and polymyositis
Guillain-Barre syndrome
Long-term corticosteroid therapy
Long-term immobilization
Motor neuropathy (such as diabetic neuropathy)
Muscular dystrophy
Rheumatoid arthritis
Severe malnutrition
Spinal cord injury

I doubt most of those apply, but thought I would list any possibilities.
Only a biopsy of the muscle will tell, and I'm glad you already have an appointment for that.
Limb-Girdle is the type of Muscular Dystrophy that comes to mind...that and the type my brother has...
Facioscapulohumeral muscular dystrophy mainly affects the face, shoulder, and upper arm muscles. However, it can affect muscles around the pelvis, hips, and lower leg.
This type is genetic, BUT in most instances no other family member is affected...they are carriers.
I carry sons and I all have a mild  one younger brother has it full out.
No one in our family was ever diagnosed with it before my brother.
It wasn't until we saw the geneticists that we learned the truth.

Anyway, my younger brother has days when he can lift a stove...not so much anymore, but he could. He has strength still on most days, but like the rest of us, can't lift anything over his head without pain.
Some days he can't lift his arms higher than his waist. The next day he's swinging an axe.

I hope this is helping you somewhat.
Avatar f tn
Thank you for such a great response. Yes from what I have read those seem to be top of list in the atrophy areas. It's happened so quickly. I've had muscle pain for years and nerve pain. If I don't take my methadone I feel on fire. I've managed to stay strong and deal with chronic pain. But the twitching hit hard out of blue in calf than moved on. Was surprised at when it hit my neck how much muscle loss I had.

Twitching does happen mostly at rest. I know laying on my side shoulder and hip extra tender these days.

Blood work fine ( cpk?) then all the others , plus the only 2 new things found was hydromyelia in thracic region and thracic outlet syndrome on EEG. So 2 nurologist find it to be a non issue. But again they've not seen how fast atrophy has hit.

Do have the random burning tingling in limbs.

I can see why people have hard time breathing when rib muscles go.

I don't drink enough water I do know that, eating is fine, meds I'm on are methadone , synthroid, lamictal and wellbutrin and plenty of ibprofin. I think those will be the death of me before anything. Theve taken me off nexuim.

I'm not weak , little off balance but not tripping on anything. Things still working as good as they can for amount of nerve pain. Thanks so much.
209987 tn?1451939065
Have you talked to your doctor about the medications? It is quite possible that they may need to change one or two of them.
Sometimes people will have serious side effects from bad ( for them ) pill combinations.
Doctors give out pills on the assumption that all people are the same...which we are not...and some people just can't handle some pills.
I know there are certain medications that I can't take together because they will cause a reverse reaction.

The methadone can actually cause the burning tingling feeling you described, but that doesn't explain the rest of the symptoms, esp the atrophy.
Another possibility ( and the reason I mentioned the drug interaction ) is that some of your symptoms can also be caused by anxiety. They have you on Wellbutrin, and had you on Nexium...wellbutrin helps anxiety but the Nexium ( as well as other prescription stomach pills ) can cause anxiety.
Anxiety does NOT cause muscular atrophy though. It can make you feel weaker however.

I guess you'll just have to wait until they do the muscle biopsy.
Please let me know the results when you find out.
Avatar f tn
Thank you , yes appt is today.. I'll keep you posted. I did go off nexium they were hoping that was problem. Also I do believe stress has added to this big time but the atrophy and breathing issue to bad now.
Avatar f tn
Good morning , so the supposed neuromuscular Dr has seen me. Took a look , did a pathetic screening and all is fine so he says. I was so shocked it took me a week to call back and say that's just unacceptable. He's very confident in his desionions. My other Nuro was pressing for a muscle biopsy and he didn't feel I needed one.

Symptoms as follows:

Twitching everywhere. Looks like a pulse when happening. Happens in r calf and neck the most.

Feels like bugs crawling in me with an allergic feeling. Even hairs on arm standing up.

Muscle atrophy the biggest concern. Have good down 2 sizes but not losing weight which is good. My I realized why my chronic pain worse. I feel like I have nothing holding me up. Breast have fallen complety to side and down about 2 in and can almost put fingers around ankle. Body different shape. I cannot figure out if fat is going or muscle. But I've never seen rib cage stick out.

I've read a touch on BFS and I have alot of those symptoms but many with that don't seem to have much atrophy.

Spastic feet and that I notice I'm flexing foot and toes up.

EEG and CPK and blood work fine.

I now waiting to get into university.
209987 tn?1451939065
Wow!  You sure are having problems with those doctors...what a shame.
Something is seriously wrong with this picture...there is obviously something wrong with you...and these "doctors" aren't helping.

I feel so bad for you.
Have you asked to see a geneticist yet? I'm starting to think that's your only hope.

How long before you get into the University?
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