feeling crisis/no diagnosis/medical system problems

[s&kaye]

I am not feeling well today and seeking my next best avenue to find out what is causing my problems so that I can deal with them. I have been pursuing a diagnosis for persistent and progressive symptoms (saliva, sparkling lights in lateral foot, itchy foot in tissues, muscle cramps). I am seeing many connections with ALS and have personal knowledge of ALS as my grandmother died from ALS over 20 years ago but did not consider that until all my symptoms seemed to point there. Doctors say that they don't know what is causing the symptoms. Now I am beginning to see that they have been dismissing my symptoms and my latest excursion to a doctor ended with him dismissing me--as a hypochrondriac. When I talk to the ALS support group asking for their help in getting to an exact diagnosis (of anything, which seems like it needs to begin with also considering if this could be ALS), they tell me I must first have a diagnosis.
Of course, the more lost I am feeling in the system, the more stressed I am--I do not feel that the "hypochondriac" label is a fit--so the symptoms are becoming more and more intense. Today, I do not feel like I can get through either the next 2 weeks or maybe even today, but past experience at my very rural emergency room gives me no hope for a resolution. Living so far from viable emergency services, I am worried about how I can get help if I need it if the symptoms progress more quickly than any sort of diagnosis and wanting to keep as much stress as possible off myself. I also need to know what signs to look for in my symptoms as an emergency in order to get myself to a hospital if I need to? How can get to a doctor who will get beyond deciding what is going on before he even looks at my case?

 

[crystalkk]

I understand your frustration, stop running to the emergency room unless you can't breath or something that needs immediate attenion.(believe me they are not going to be able to help you get any answers) I no from my own experience.

Are you having any other symptoms , besides the ones that you mentioned? What are sparkling lights in lateral foot?

Anxiety will make everything become more and more intense are you taking anything.

What tests have they ran?

 

[planningguy]

I agree with Crystal, an emergency room is not going to address chronic or ongoing symptoms.

Are you seeing a primary care physician in your area? I think the first step is to have a regular doctor seeing you, who can manage your case and send you to a specialist as needed. ER doctors are going to keep very limited chart notes, and not speculate much at all as to what is happening. ER trips also are a lot more expensive than scheduled Dr visits. I know in a rural area this may involve travelling a bit.

What types of doctors have you seen? Have you been referred to a neurologist? The description of your symptoms is vague (Like Crystal, I don't really know what you mean by sparkling lights or lateral foot).

I imagine it must be tragic to lose a family member to ALS, but keep in mind that very few cases are familial (clearly genetic). Most are sporadic or random, and there are a lot of conditions that cause similiar symptoms and are perfectly treatable.

Welcome to the forum. I wish you well in getting to the bottom of what ails you.

Robert