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Almost33

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Ny
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Buffalo
First-- Thank you in advance to anyone who takes the time to read and respond to this post. I have also read all of the sticky posts. I do not believe that my symptoms are consistent with anxiety (although apparently from the reaction of most of my doctors that is highly debatable).

My symptoms started about two years ago in Feb. 2010 (it seems like such a long time ago) with an odd headache. This lasted for about four months and my GP sent me to a neurologist for this who performed an MRI of head and cervical spine. This came back normal except it did mention that my cervical spine was abnormally straight and attributed this to cervical paraspinal muscle spasms. Neurologist said that this was not neurological in nature and sent me on my way with little explanation as to why my neck was in spasm for nearly four months. Around this time, I began to notice fairly widespread, very random muscle twitching (one in face, then rib cage, then right leg etc.) I was also starting to notice that my core muscles seems weaker then normal (I had always been an avid athlete and things working out was becoming increasingly difficult) Already on high alert, I went back to the neurologist, who ordered an EMG of left leg/arm. This came back normal as did all bloodwork. He said all of this was being caused by anxiety--

I was not convinced so I requested a referral to a neuromuscular specialist who is a director of MDA clinic in our area. He said he could not detect any clinical weakness and there were no UMN signs (he never really credited the muscles spasms I was having, telling me that they were just to random to mean anything). He sent me on my way with no follow-up.

Since that time, summer of 2010, I have been to many doctors. I had a second EMG performed on right leg/right arm (normal), and a third EMG performed one year later again on left leg/left arm (normal). I have been to four neurologists (3 of whom were neuromuscular specialists). I have also been to an ENT (because I have been having problems with my voice), who could find nothing wrong. In addition, I have been to a pulmonologist because of mild difficulty breathing (my pulmonary function tests came back normal-- most of them, in fact, 130% of normal). I have even been to a psychiatrist and continue to see him. Unlike all of my doctors, he is not entirely convinced that I am making all of this up.

Unfortunately, my symptoms seem to get worse and worse and I seem to be in a situation where I am not taken seriously from the moment I walk into the doctor's office (needless to say, I wish I had never led with twitching).

Because the most noticeable weakness to me is in my core muscles and upper back, my primary question is whether anyone knows how a neurologist would check for weakness in these muscles? Checking these muscles does not seem to be standard in a regular neuro exam, nor in a standard EMG. While I have consistently stated during exams that these are my weakest muscles, I have yet to convince any doctor that they are, in fact, weak. My belief that they are weak stems from my difficulty standing for long periods of time and holding my back up straight when sitting at my desk at work etc.

Again, thank you and sorry for the very long post. My prayers are with this entire community.
 
Dear Almost,

Four neurologists, three emg's in less than two years. All say NO ALS; and yet you continue to question them? None of us here are drs and yet you want our advice. Well, here's mine...STEP away from the computer, STOP looking for answers online. CONTINUE seeing the psychiatrist....the mind is a terrible thing to waste! Unless you REALLY WANT this disease, I know a few people who will GLADLY switch places with you.

Start living,

Kimberly
 
almost33 - in your info section you state your interest here is that you are experiencing symptoms consistent with ALS. Frankly from what I read in your post I did not see anything that is remotely consistent with ALS. It sounds as if you have seen some credible Dr's who appear to be subject matter experts who have all advised you that you have nothing to worry about. I find it some what ironic that you mention mild difficulty breathing yet your tests and breathing function came back as not only normal but 130% of normal. Do you see the irony there? Where is the mild difficulty?

Unless there is more to the story I would suggest that you listen to your Dr's and put this unfounded concern behind you quickly.
 
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Believe your doctors.
 
almost33,i have a mixture of good and bad news and a possibility.

first good news,neuromuscular desease follow a pattern of distal muscle weakness (hands/lower arms,feet/lower legs) or proximal muscle weakness (thighs/hip girdle,upper arms/shoulders)........eventually you do get trunk weakness .

bad news is no doctor is going to take you seriously if you are under a psychiatrist for health related anxiety reasons........period.

possibility is you did not mention if they did a mri of your spine,a problem with the spine could cause trunk weakness and spasms.
 
Frankly from what I read in your post I did not see anything that is remotely consistent with ALS.

He's twitching, TedH5. And he gets tired if he stands too long or sits too long, so that's weakness. And when you G--gle "twitching and weakness", you get pointed here, where you can read about all kinds of other ALS symptoms like unexplained muscle spasms and difficulty speaking and breathing. :roll:

Does that cover everything for you, Almost33? And are you really almost 33 years of age? Have you had any difficulty swallowing or excess saliva? Which of your many symptoms does your psychiatrist think are legitimate and how does he think you should go about getting them treated?
 
Thank you for your responses. "He" happens to be a she and I am in my early thirties- forgot to mention that in my original posting. My psychiatrist thinks that I need to find a doctor that I trust a bit more- he thinks that I certainly have some anxiety, but does not think that I have anything more sinister in his area of specialty, ie depression etc. He said that we know our bodies better than anyone else and if we don't think that we are getting the answers that we need to keep looking until we are satisfied. This makes sense to me- but so far I have pretty much been "booted" out of every specialty.

I also agree that it is strange that I am having mild difficulty breathing but the PFT came out basically normal. The only abnormal test at the time was a five minute walk test and my oxygen levels fell below normal while exercising. My pulmonologist has discarded anything cardio-pulmonary, but is at a loss as to why it is happening. He said it was inconsistent with neuromuscular weakness because of the high PFT results. Again, he is unsure of what to do with me, but told me to come back if it gets worse.

Anyway, thank you again. I suppose I have just been frustrated that I feel so awful and have no answers or really any path forward after almost two years.
 
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