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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?
 
Dancer, while I can't answer anything about specialists in Spain, I can recommend you look up Primary Lateral Sclerosis on FB, as there are a couple of groups that have people from all over the world and may have some PLS specific info. There is also a Research group that keeps members up to date on all the neuro research out there as it pertains to MND.

Speaking of my specific experience with regards to diagnosis:

I am lucky that once I presented with physical symptoms, I was fast tracked (though it seemed like forever at the time) and went from a neuro ophthalmologist (as a Multiple Sclerosis specialist) to a regular neuro, to a neuro geneticist to a neuromuscular specialist. As there seems to be only one or two specialists in each category in my area, there was no real choice in who I went to. I was passed from one to the next quite quickly when they realized they weren't the specialist for me.


As I was being tossed from one specialist to the other, I was ALSO seeing a psychiatrist who specialized in so called "functional disorders", who assessed me (and I sincerely hoped he'd find it WAS all in my head) and wrote me a very clear and straightforward "Dear colleague..." letter to give to any doctor, which indicated that I was of sound mind, and that my physical symptoms were not induced by anything emotional/psychological. I bring it with me to any new specialist just in case. It shows I was not only compliant in exploring any cause of my disorder, but that it was strictly physiological in origin. It was humiliating to have to go to a psychiatrist in the beginning, but he has been a life (and mind!) saver for me.

Best wishes in your continued search for answers. I have found that sometimes there ARE no real answers, and that when you find yourself in the atypical neuro category, you are sometimes ahead of the doctors in knowledge about your condition.
 
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PLS is a VERY rare disease. About 1-2 people per 16,000,000 get it each year. The average life span of PLS is 20 years. I am not saying you die from it. Spain has a population of 46,000,000. So around 3 to 6 people get it a year and the are about 60 to 120 people with PLS. Most neuros will never see it. In the US the best place to go is ALS clinics. They know about ALS and the difference between ALS and PLS. I go an MDA/ALS clinic.

For the most part you will have a clean EMG. However, some small % of PLS patients have anomalies in their EMG.
 
Hi,

I shared similar diagnostic frustrations at the beginning of my PLS journey. My symptoms started with slurred speech. I had a clean EMG and clinical exam at that time. My reflexes were slightly brisk but still within normal. So I was given the stress/anxiety diagnosis and sent on my way with antidepressants.

At the time I suspected the diagnosis was not correct but figured there were three possible outcomes: the experts were right and my speech would get better (Yay!), my speech would stay the same (I could live with that), or things would get worse and be "diagnosable". So I waited.

A year or two later I noticed that I was getting clumsy. This progressed to the point four years later that it was obvious there was something wrong. I booked another appointment with a neurologist. This time my clinical exam showed pathological UMN symptoms, like Babinski, that cannot be faked. My EMG is still clean so I was given a PLS diagnosis.

I think it is common with many neurological illnesses to be given the anxiety/stress diagnosis because many, many people fall into that category. You just have to read some of the posts in the DIHALS section of this forum to get the picture. In fact, I tried sending you a private message (unfortunately it didn't go though) rather than responding to your public thread because I didn't want to validate the many people that come to this site with stress/anxiety.

Anyway, I just wanted to say that I understand your frustration. Ultimately there is no treatment for this disease so at least you can take comfort that diagnosis will make no difference in the progression. I wish you luck.
 
Reading some of the posts in this series has been very helpful. Thanks so much for posting it. On a side note, looks like I won't even consider flying across the pond to Mayo at Christmas-time like I had been debating. This girl had just as much trouble with them as I've had over here...
 
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?

1st Neurologist told me my EMG was normal and to look into exercise compartment syndrome.
2nd Neurologist told me my EMG was normal and sent me to Johns Hopkins.
3rd Neurologist at Johns Hopkins told me I have PLS.

No one though I was a psych case, but first one didn't take me seriously.
 
Rubato

Your are a neighbor of mine. I lived in Flower Mound and now live in Lewisville TX. You mentioned the ALS/MDA clinic, is this at Texas neurology or SW Medical? I went to 3 other neurologists before I could get a diagnosis. It took me like 4 years of doctors looking at me and scratching their heads, finally got a diagnosis at Texas Neurology.
Eydie
 
Rubato

Your are a neighbor of mine. I lived in Flower Mound and now live in Lewisville TX. You mentioned the ALS/MDA clinic, is this at Texas neurology or SW Medical? I went to 3 other neurologists before I could get a diagnosis. It took me like 4 years of doctors looking at me and scratching their heads, finally got a diagnosis at Texas Neurology.
Eydie

I go to the MDA/ALS Clinic at UT Southwestern. I see the director, Dr. Jeffery Elliot. It is a clinic environment so you can see anyone in the clinic since they all consult with one another. They have a handful of PLS patients.
 
I go to the MDA/ALS Clinic at UT Southwestern. I see the director, Dr. Jeffery Elliot. It is a clinic environment so you can see anyone in the clinic since they all consult with one another. They have a handful of PLS patients.

I also go to Dr Elliott at UTSW in Dallas. Had a diagnosis of PLS from first neuro in 2014 and went to clinic at UTSW for second opinion.
 
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