Old 11-27-2015, 11:19 PM #1 (permalink)
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Default i think i have it, in a country where i cant get an emg test.

hi my name is kay and im seeking some advice as to whether i should purchase a plane ticket and a stay at a hotel to get a diagnosis.

For the past 4 years i convinced myself it was anxiety. Got diagnosed with mitral valve prolapse which is not normally so symptomatic but i was happy with that diagnosis. Now 4 years later i am always fatigued, walking up an incline leaves me winded. I dont want to write an epistle, not the type to overreact just seeking advice as to whether i should get this checked and the best country/state to go to.

Symptoms : Atrophy, very noticeable, people comment all the time, mostly my left side especially my face, my upper left shoulder, when i move my left hand you can see the bones, the left side of my face is sunken. My butt cheeks have diminished.

Twitches/fasciculations : allll the timmeee! my fingers will twitch randomly, my chest muscles twitch the most.

Weakness /fatigue : this is where it gets kinda iffy, i will have a moment where i have to pray to walk from one end of the room to the next, but on other days its not so bad, still weak but not so bad.

My legs : weaker by the day, they burn when i lift them, very specific muscle - my glutes.

Issues swallowing and i fumble my words, i also clear my throat alot, as if im trying to clear mucus from a passage its not suppose to be going down, but its extremely difficult to remove this mucus.

Breathing : i feel like my back muscle just wont allow me to get proper breaths. like i have to force it to expand


other symptoms - foggyness , dizzyness from feeling exhausted, lotsa tummy issues (which i think is from the anxiety) , very bad headaches, blurry vision, inability to focus.


any help would be appreciated. my primary care physician thinks its my mvp, i dont see how that can cause the atrophy. which is my main concern along with the twitching. i use to be very active and these days i can barely do what i use to. the one thing that makes me feel like this is not als is when i wake in the mornings, my symptoms are not so bad, but within an hr i feel like i havent rested in years, i get soooo weaaak it takes alot just to finish my day. yes i can lift my arms and my legs. i can do a jump even tho my legs burn like crazy.

thanks in advance.

thanks
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Old 11-28-2015, 12:15 AM #2 (permalink)
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Default Re: i think i have it, in a country where i cant get an emg test.

Odd that you cannot get an emg in Florida.

Your mental issues have nothing to do with ALS.
Twitches are for too common to be diagnostic of anything.
Weakness is associated with ALS, but it doesn't have good days and bad days, only bad. It is also not associated with burning. It's simply inability to move muscles.
In ALS breathing issues are associated with a failing diaphragm nerve, not back muscles.

Atrophy in ALS follows clinical weakness, and is a later stage.

I have no clue what's causing your issues but it does not sound like ALS.
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Old 11-28-2015, 12:21 AM #3 (permalink)
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Default Re: i think i have it, in a country where i cant get an emg test.

Hi Kay.

As Greg pointed out, there's not a lot of ALS in your symptoms. In fact, for most of your post I was thinking this person has a heart problem. I can't diagnose you because I'm not a doctor, but I know ALS fairly well and you really didn't describe it.

EMGs are neurological studies, and I'm not convinced that you have a neurological problem. I would advise you to let your GP doctor lead your health investigation. If you don't think your doctor is thorough enough or smart enough, get another one.
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Old 11-28-2015, 12:41 AM #4 (permalink)
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Default Re: i think i have it, in a country where i cant get an emg test.

You might see a clinical geneticist. There are connective tissue disorders that cause MVP and the kinds of symptoms you mentioned, including atrophy. You can find a genetics clinic at academic medical centers.

Best,
Laurie
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Old 11-28-2015, 12:22 PM #5 (permalink)
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Default Re: i think i have it, in a country where i cant get an emg test.

Thank you all for the messages. i will take the advice and continue working with my doctor to see whats going on. i spent the night reading through soo many threads on here and i agree that maybe this isnt als.

im actually in JAMAICA the country not florida, i think i signed up with my cousins florida address, its a habit.

Its surprising that there is nowhere here that a person can get an emg test done. best i could do from searches is find a chiropracter.

Thanks again , you all are in my prayers.
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Old 11-28-2015, 05:00 PM #6 (permalink)
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Default Re: i think i have it, in a country where i cant get an emg test.

Couple thoughts: You might call your health insurance provider and ask what neurologist they use in Jamaica.


OR you can email paula.dawson@rehabcaribbean.com. She’s a neurologist in Kingston who specializes in sports medicine and the EMG/NCV at the Rehabilitation Institute of the Caribbean.


Stay away from chiropractors. They are not trained to diagnose neurological diseases, although many chiropractors think they can.
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