Andrea1653
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- Aug 30, 2017
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I had hoped that I would be able to report back with some kind of diagnosis, but unfortunately I still do not have one. Timeline since my last post:
-went to a podiatrist. Has a foot MRI which showed all sorts of things such as tendinopathy, mucoid degeneration, joint effusions, tenosynovitis, edema, diffuse peritendinitis, etc. Course of treatment was an injection in my foot and physical therapy. Neither of these helped and podiatrist wanted to wait for my neuromuscular appointment because he said that with my symptoms/MRI results and the fact that his treatments did not work, things aren’t adding up and he’s not sure what is going on. Physical Therapist also kept asking me when I was seeing a neurologist because they didn’t know why I wasn’t improving either.
-I had been seeing a cardiologist from my last pregnancy and he noticed consistent high hemaglobin and hematocrit levels. He ran all sorts of tests, including echocardiogram, heart is fine. Refered me to a pulmonologist and hematologist.
-Hematologist found nothing. Pulamnoligist did a breathing test. The technician doing the test said that some of my numbers were low. That I was able to get oxygen in just fine, but I was having a hard time getting it out. After a breathing treatment, my numbers went up slightly. I don’t think I should be having trouble getting oxygen out for a supposedly “healthy” 33 year old female. Assessment said ”Dyspnea, unspecified type”. No clue what that means.
-Neuromuscular appointment. This is where I need advice as I just don’t understand. I picked a university hospital (Ohio State University) because of all of the advice on here, stating that those are the best places to go. Well saying my appointment was a huge disappointment, would be an understatement. I waited 5 months for this appointment. The student was the one who took my medical history and did my exam. She seemed frustrated, didn’t seem to know what she was doing and focused most of the time on my past history instead of my current symptoms. Her exam was not thorough, I was fully clothed, didn’t check a lot of reflexes or have me walk on my heels/toes, etc. The neuro came in at the end - he was in there for less than 5 minutes and it seemed like he was in a hurry to get to his next appointment. I tried telling him about my progressive symptoms and my foot atrophy/weekness, and he stopped me and said “I saw you had a diagnosis of BFS. You don’t have Lou Gerig’s disease”. He said this without me bringing it up, I was just trying to tell him about my fasciculations, weakness and atrophy. Now I could understand this statement if he listened to my symptoms and gave me a proper exam, but he did neither of those and neither did his student. He didn’t even look at my foot and just told me it was probably disuse atrophy. How can you have disuse atrophy on one side of your body and not the other?
My symptoms have gotten progressively worse since I posted here last and I guess my question is: just because I have one “essentially normal” EMG, why can I not get anyone to listen to me? My symptoms are getting worse and I can’t get anyone to listen to my symptoms and give me a proper exam. I don’t feel like I should have to wait for a limb to quit working before someone will actually take me seriously, but I think that’s the corner I’m being backed into. Can someone please advise me on what they would do in my situation? I attached my MRI and PFT. Your input would be greatly
appreciated.
-went to a podiatrist. Has a foot MRI which showed all sorts of things such as tendinopathy, mucoid degeneration, joint effusions, tenosynovitis, edema, diffuse peritendinitis, etc. Course of treatment was an injection in my foot and physical therapy. Neither of these helped and podiatrist wanted to wait for my neuromuscular appointment because he said that with my symptoms/MRI results and the fact that his treatments did not work, things aren’t adding up and he’s not sure what is going on. Physical Therapist also kept asking me when I was seeing a neurologist because they didn’t know why I wasn’t improving either.
-I had been seeing a cardiologist from my last pregnancy and he noticed consistent high hemaglobin and hematocrit levels. He ran all sorts of tests, including echocardiogram, heart is fine. Refered me to a pulmonologist and hematologist.
-Hematologist found nothing. Pulamnoligist did a breathing test. The technician doing the test said that some of my numbers were low. That I was able to get oxygen in just fine, but I was having a hard time getting it out. After a breathing treatment, my numbers went up slightly. I don’t think I should be having trouble getting oxygen out for a supposedly “healthy” 33 year old female. Assessment said ”Dyspnea, unspecified type”. No clue what that means.
-Neuromuscular appointment. This is where I need advice as I just don’t understand. I picked a university hospital (Ohio State University) because of all of the advice on here, stating that those are the best places to go. Well saying my appointment was a huge disappointment, would be an understatement. I waited 5 months for this appointment. The student was the one who took my medical history and did my exam. She seemed frustrated, didn’t seem to know what she was doing and focused most of the time on my past history instead of my current symptoms. Her exam was not thorough, I was fully clothed, didn’t check a lot of reflexes or have me walk on my heels/toes, etc. The neuro came in at the end - he was in there for less than 5 minutes and it seemed like he was in a hurry to get to his next appointment. I tried telling him about my progressive symptoms and my foot atrophy/weekness, and he stopped me and said “I saw you had a diagnosis of BFS. You don’t have Lou Gerig’s disease”. He said this without me bringing it up, I was just trying to tell him about my fasciculations, weakness and atrophy. Now I could understand this statement if he listened to my symptoms and gave me a proper exam, but he did neither of those and neither did his student. He didn’t even look at my foot and just told me it was probably disuse atrophy. How can you have disuse atrophy on one side of your body and not the other?
My symptoms have gotten progressively worse since I posted here last and I guess my question is: just because I have one “essentially normal” EMG, why can I not get anyone to listen to me? My symptoms are getting worse and I can’t get anyone to listen to my symptoms and give me a proper exam. I don’t feel like I should have to wait for a limb to quit working before someone will actually take me seriously, but I think that’s the corner I’m being backed into. Can someone please advise me on what they would do in my situation? I attached my MRI and PFT. Your input would be greatly
appreciated.
Attachments
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