dancergymnast
Member
- Joined
- Jun 2, 2016
- Messages
- 11
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2016
- Country
- ESP
- State
- Cantabria
- City
- Santander
Hi everyone,
I am still stuck in a diagnostic disaster. I am an American living in northern Spain, and Spain has both private health care and public (free) health care. I started my journey in the private system because it goes faster and it all started with just an ankle problem. In June this year, I was diagnosed with an Upper Motor Neuron Disease by four private neurologists (three of them outside of my state), and was sent to the public system because the private system is not prepared to handle such cases.
Those of you who have seen my previous posts might remember that the public doctor then diagnosed me as a psych case (I recently changed public neurologists, within the same hospital, but was given the same opinion by an even more condescending doctor who wouldn't even let me ask questions or comment on anything). Funny thing is, when I was admitted to the hospital in July on the neurology floor for further testing, I had a Psych consult, who deemed me perfectly healthy psychologically.
Given the lack of a concrete diagnosis (which could potentially lead to being able to participate in clinical trials), I returned to southern Spain where another private neurologist had diagnosed me. He had me do another EMG to rule out ALS vs. PLS. I just got off the phone with him, and he said as the EMG came back normal, he can definitely rule out ALS but isn't sure where to go from there, since the EMG came back normal. Correct me if I'm wrong, but EMGs are frequently normal in PLS patients, right? Or could have very small abnormalities, but nothing like ALS.
Also, in PLS, sometimes there are alterations in the MEP, right? Which I have.
So, it seems like I'm dealing with an entire country full of doctors who have no idea what PLS is nor who realize that in PLS the EMG can come back normal.
I know everyone recommends not to read up on the internet, but given the fact that even neurologists don't know our condition, I feel we don't have much choice. And there should be no problem sticking to medical articles written by doctors. But I feel like, at least here, the doctors don't want to hear anything about what I read. Like what I read either has no value, or they are too arrogant to have someone suggest that they may not know everything in the world about motor neuron diseases.
So my main question is: how long did it take you to find a doctor who knew what the heck PLS was? How many doctors did you see before that? Did any of them disregard you completely and throw you off to Psych?
I am still stuck in a diagnostic disaster. I am an American living in northern Spain, and Spain has both private health care and public (free) health care. I started my journey in the private system because it goes faster and it all started with just an ankle problem. In June this year, I was diagnosed with an Upper Motor Neuron Disease by four private neurologists (three of them outside of my state), and was sent to the public system because the private system is not prepared to handle such cases.
Those of you who have seen my previous posts might remember that the public doctor then diagnosed me as a psych case (I recently changed public neurologists, within the same hospital, but was given the same opinion by an even more condescending doctor who wouldn't even let me ask questions or comment on anything). Funny thing is, when I was admitted to the hospital in July on the neurology floor for further testing, I had a Psych consult, who deemed me perfectly healthy psychologically.
Given the lack of a concrete diagnosis (which could potentially lead to being able to participate in clinical trials), I returned to southern Spain where another private neurologist had diagnosed me. He had me do another EMG to rule out ALS vs. PLS. I just got off the phone with him, and he said as the EMG came back normal, he can definitely rule out ALS but isn't sure where to go from there, since the EMG came back normal. Correct me if I'm wrong, but EMGs are frequently normal in PLS patients, right? Or could have very small abnormalities, but nothing like ALS.
Also, in PLS, sometimes there are alterations in the MEP, right? Which I have.
So, it seems like I'm dealing with an entire country full of doctors who have no idea what PLS is nor who realize that in PLS the EMG can come back normal.
I know everyone recommends not to read up on the internet, but given the fact that even neurologists don't know our condition, I feel we don't have much choice. And there should be no problem sticking to medical articles written by doctors. But I feel like, at least here, the doctors don't want to hear anything about what I read. Like what I read either has no value, or they are too arrogant to have someone suggest that they may not know everything in the world about motor neuron diseases.
So my main question is: how long did it take you to find a doctor who knew what the heck PLS was? How many doctors did you see before that? Did any of them disregard you completely and throw you off to Psych?