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Dr. Bob
Dr. Bob, Neurologist (MD)
Category: Neurology
Satisfied Customers: 5485
Experience:  Neurology & Int Medicine (US Trained): 20 yrs experience
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Second opinion] My daughter was diagnosed with congenital

Customer Question

second opinion] My daughter was diagnosed with congenital Muscular Dystrophy at birth, I myself am now having mobility problems a lot of pain all over my body which drs thought was fibromyalgia but I haven't got all the tender points for this, ive now been diagnosed with leaky valves in my legs too. My ck was over 300 in my last blood test. My legs are so stiff that I struggle to walk and lift my legs out of bed each morning is extremely difficult I cant squit to the floor or climb stairs any more its like my bodys forgot how. I'm not sure what to do as my drs just arnt listening any more.
Submitted: 2 months ago.
Category: Neurology
Expert:  Dr. Bob replied 2 months ago.

I would suggest you see a neurologist and have nerve conduction testing (i.e. NCV/EMG). This will tell you if you have a nerve or neuromuscular condition accounting for your symptoms. If that test is negative, they can do a muscle biopsy and/or genetic testing.

Customer: replied 2 months ago.
Do you know. Can I have a condition similar to my daughters. Can I also ask would being over weight cause the high ck result please
Expert:  Dr. Bob replied 2 months ago.

Hi Sarah. Most forms of MD present present during the first decade or two of life. There are some forms, however, that may not become apparent until much later, especially if the individual has a milder case. The nerve testing might help in this regard. Genetic testing would reveal if there was any genetic relationship to your conditions. Being overweight can bring on mobility issues earlier, no matter the cause, of course, and may also independently cause an increase in CK above the normal range.

Expert:  Dr. Bob replied 2 months ago.

CK is an important part of the evaluation of patients with muscle weakness or myalgia, and of assessing patients with myopathies or rhabdomyolysis. But elevated CK sometimes is an incidental finding in patients without muscle-related symptoms or with only minimal nonspecific muscle symptoms (eg, cramps, spasms, fatigue) that do not significantly interfere with activities of daily living, and do not represent pathology. CK levels may also vary depending on one's ethnicity. For example, in one study involving normal individuals, 13% of white Europeans, 23% of South Asians, and 49% of African Americans had serum CK activities above the normal reference intervals.

Customer: replied 2 months ago.
I'm finding I get weaker every day. I can't lift my arms up to brush my hair. Walking is getting harder and more painful. I just don't know what I should do.
Expert:  Dr. Bob replied 2 months ago.

You need to see a neurologist that specializes in neuromuscular disorders.

Customer: replied 2 months ago.
Ok thank for your help do you have any idea what I may have. I'm sure it's a hard question but what's your thoughts please
Expert:  Dr. Bob replied 2 months ago.

My concern would be a neuromuscular condition of some sort, but I could not venture a diagnosis without examining you and having your complete records.

Customer: replied 2 months ago.
Right ok. Now all I have to do is get my gp to listen to what you have said and refer me
Expert:  Dr. Bob replied 2 months ago.

Or ask about nerve conduction testing (NCV/EMG).

Expert:  Dr. Bob replied 1 month ago.

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Much thanks,

Doctor-Bob