41 yr. old woman for the past yr I have had symptoms starting with some falls and burning horrific pain in my R forearm, it let up for a few months only having back and scapula/shoulder pain then the burning came back (about 5 months ago and hasnt gone away) to my R forearm and spread quickly to L forearm then both biceps both triceps, both shoulders, both of the scapula, all muscle in my back, my peck muscles and upper and lower abdominal muscles(all of prior three makes it feel as though something heavy is on my chest and I cant breathe properly) my thighs back and front and both calves, intense burning pain i rank it up there with hard labor pains, maybe worse...yes worse @ times, kind of pain almost makes u pass out and hope u don’t wake up or actually commit suicide. HORRIFIC pain. the only the amount of falls has increase dramatically within past few months and now, i get up take 2 or 3 steps and BAM all my weight crashes to the floor i land on my knees most often, this has happened 4 times over past 6 1/2 weeks i went to ER one of those times because i was bruised from head to toe from falls and bumping into walls and furniture. They gave me a CT which showed calcification of the basal ganglia cant remember interior L or R cant remember ventricle. Anyway when i research it sounds like a lower motor neuron disease because its affecting my limbs and breathing muscles. nothing in my face or throat. I do have tics i guess where my arm leg or hand muscles will move or jump involuntarily. I end up kicking furniture or throwing something that is in my hand or other times while grasping objects my hand just "lets go" of whatever I'm holding. I'm also plagued with nausea constantly, at times vomiting. I am having trouble remembering things, at times say things that don’t make sense, even though I think first and what i want to say doesn’t come out something entirely different comes out. Also last yr when it first began with my forearm i had a litany of blood tests and my CK level i believe is supposed to b normal up to 79?? Anyway mine was somewhere in the 300 range. I didn’t know then what it means, but i think know if i had it checked it would b just as if not higher due to the multiple muscles now affected. My NEW dr refuses to give me a test to check ck levels but did order RA ANA and all the other tests which i know i don’t have and all negative, he knows nothing about any of this as he told me when i mentioned MD he said to me, that doesn’t add up ur not a male and ur too old????? I mean come on aren’t 75% of MD types both men and women? He is one who does not admit when he is wrong, and tells me maybe my vision and falling is because i need glasses, go make an eye apt...OMG...doesn’t all this info add up to some sort of a neurological/muscular disease...he also told me that everyone has calcification of the basal ganglia, and i sd yes but r they also having all these symptoms of falling and muscle pain ect??? Also refused to refer me to a neurologist/and order the brain MRI ER dr. told me to follow up with when i went to ER and ER Dr. sd to see nuero/and have MRI because of the CT results and symptoms, my Dr. says he doesn’t trust any ER Dr. and if Einstein’s brother told him to get me a MRI he wouldn’t do it, I then sd well if Einstein had a brother and he was a Dr. I think I’d trust him obviously "smarts" run in the family........ OK so here i am and am in great pain from typing this. I think I'm dying and NO ONE WILL EVEN listen...please help anyone with any ideas. Besides gettn a new Dr...I already know that. Oh yes also I normally weigh 140 lbs and since this has happened I now weigh 115 lbs, u can tell by look at me I am very sick i almost look anorexic
I agree with you...on every point made...your doctor sounds exactly like mine...but mine keeps telling me that I ONLY have anxiety, and refuses to check me for anything else...even my broken bones that are now causing nerve damge have been narrowed down to anxiety...ugh.
It's terrible when they refuse to test you...especially when these types of problems run in your family, as they do in mine...my brother has Facio MD.
First off, I DO believe that you have "something" going on...I have most of the same symptoms as you, and my old doctor started running tests on me because he thought it was MS...was never diagnosed, but I have an appointment with genetics in October, so maybe they'll figure it out.
High CPK levels may be seen in patients who have:
Brain injury or stroke
Dermatomyositis or polymyositis
Inflammation of the heart muscle (myocarditis)
Lung tissue death (pulmonary infarction)
I would like you to read up on Dermatomyositis, and tell me what you think.
I'm very worried for you because of your high CK levels.
You seriously need to find a new doctor because of this alone...which you have already stated.
I would also try reading posts in the MS forum to see if your symptoms compare to those that have it.
You could very likely have more than one problem, as many others have come to learn.
Good luck to you in your quest for health care help, and please keep me posted.
thanks for the reply, I actually think because my ct scan found calcifiction of the basal ganglia (the part of the brain that controls movement your limbs and breathing muscles) along with my frequent falls , muscle weakness ect that i may have progressive muscular atrophy its a lower motor nueron disease and since i dont have any choking, swallowing facial muscular tremors eye movement none of those that it isnt ALS not unless it hasnt shown up yet and i'm only experiencing LMN problems right now. But the progressive muscular atrophy is a disease that is caused by calcification of the basal ganglia. Soooooo, i think things are a bit clearer. No quickly i'll tell u about todays dr. visit i had to get something diff 4 pain and switch my ativan to diazapam for all anxiety and insomnia. So the butt-hole did help me out with my medications, than the good Lord!!! But hear is a question he tested my elbow and knee reflexes today and it was odd, hyperflexia in right leg and l arm and absolutely NO resonse from either r arm or l leg. I've heard of hyerflexia and hypoflexia but not no response at all. I lookd up for the PMA and it does say loss of reflexes but it also says its painless???? I definately have Horrific pain, so maybe ALS and upper motor nuerons havent been affected yet?? I'm sure its one of the two. Have u ever heard of no reflexes in ALS?
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