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Mdcastle

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Looks like my previous thread was locked, I thought I'd update.

Cervical MRI found some mild to moderate herniations, stenosis, and on C6-C7, "disc osteophyte complex" on right. Spine doctor thought this could explain my worse weakness in my right arm that the neuro noted, sent me to physical therapy.

Physical therapist noticed tightness in my upper back, bilateral measurable fatiguable weakness in my grip strength (declining about 50% over three attempts), but seemed to be grasping at straws and while giving me some excercises to do) , thought I had a "neurological issue" I messaged the neuro I saw, and he offered me another appointment coming up this week.

Since my first post, my overall condition seems to have gotten worse, basically every muscle will shake if stretched or held against gravity. I'm having a difficult time typing because of the "weakness" and clumsiness in my fingers, and typing is my job. The lump in my throat has resolved, though. But I can still ride a bicycle and can't point out any specific thing that just doesn't work. I have noticed shortness of breath when laying down after a big meal.

Talking is getting harder to make words come out OK, but I can say them if I make a second attempt, others continue to deny any changes in what I sound like. Tongue looks (to me) like it's getting atrophied, but not to others, a lot of time it feels twitchy / buzzy / burning. I've looked and I don't see any movement aside from an occasional twitch on the end. My parents say that tongues get more assymetrical and uneven as you get older so mine has probably been that way for a while, and I shouldn't be looking at pictures online.

*What would happen if I just presented at an ER demanding they find what's wrong with me once an for all. I am really tired of getting bounced around from doctor to doctor while continuing to deteriorate.

*So what should I say at my neuro appointment to try to get answers without sounding like an anxious hypochondriac (even if I am?). I'm not sure if he sill doesn't order an EMG if I should accept that, or demand that he order one. My parents are of the mind that you can put absolute trust in what doctors do, and if he even thought there was the slightest chance I had ALS he would have ordered further investigation the first time, and that although not a neuro-muscular specialist he should have the experience to know.

*My parents think I have CIDP (when not telling me my problems are all in my head). Without trying to diagnose me, does this even sound like a possibility, it seems like the symptoms come on a lot faster than ALS typically does which would be my case, I even read that anxiety can in fact provoke autoimmune disorders!

Thanks for any insights!
 

Nikki J

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If you go to the ED with non emergent symptoms what should happen is you will be given an exam some probably unnecessary blood tests and told to follow up with your regular doctor and or neurologist. It is not their job or expertise to diagnose this sort of thing. You would be wasting scarce resouces ( their time) and your insurance company's money.

I am not in favor of demanding tests. It is appropriate to ask questions like based on my symptoms, progression and exam what could this be? What tests do I need to find out? If the answer does not include ALS or an EMG it is appropriate to then say I have been worried about ALS. I am happy it is not on your list but can you explain how you can exclude it now?
From what you have said I doubt it is ALS or CIDP but it is your neurologist's job to figure it out. If you are dissatisfied with the care you could seek a second opinion
 
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Atsugi

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*What would happen if I just presented at an ER demanding they find what's wrong with me once an for all?

>>>ER docs are trained to stabilize a patient's life signs and discharge them. They are not diagnosticians. Nor do they have the resources available to diagnose a complex illness.

>>>You're already stable, so an ER would be a waste of time and money. ER's are for people with emergencies.

*So what should I say at my neuro appointment to try to get answers ...demand that he order an EMG?

>>>That's like taking your car to a mechanic for engine sputtering, and demanding that they change all the tires. Your neuro is a specially trained expert--believe her.

*CIDP?
>>>We're not doctors, so cannot diagnose you. But we know ALS really well, and you don't have it.

MDCASTLE: We put some effort into helping people with this incurable terminal disease. Your posts distract us from our mission. You have our answer--no ALS--it's time to move on. Good luck with your doctors.
 

skipper66

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A emergency room is to take care of real emergencies at the time they are happening. It isn't a place to get a diagnosis for problems you had for a long time. That is abuse of the system and insurance companies. Would you like to be a person having a heartattack and your care being held up because somebody was demanding and didn't go to a clinic to be checked out. Or, have your kids be in a wreck and it's a life and death emergency and you have a arrogant patient wanting immediately answers while your family member is in danger of dying. I hate inconsiderate people and we get tons of them come in where I work. We have people try to come in and use the ER for a damn pregnancy test. You can get one for a $ at the dollar store. I'm sorry you are having issues but if you don't like the Dr's your going to find someone else.
 
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