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Old 04-17-2015, 12:55 PM #11
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Originally Posted by echoes long ago View Post
is the pain and weakness in your shoulder and arm on one side only?
I would look into the cervical herniations some more, get another opinion. Also have you looked into TOS, Thoracic Outlet Syndrome? Are you a swimmer, weight lifter or very athletic?
It is only in my left arm/shoulder. I am seeing a neuro surgeon on Monday and then another neuro on Thursday next week. I hope after these visits, they will know more. I have not looked into TOS...would that cause my symptoms (including weakness and abnormal EMG)?

Not athetic, just average. Especially now, I feel like a big waste (can't do even small exercises).:sob:
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Old 04-17-2015, 12:59 PM #12
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I was dx w/ Amyotrophy and I will give encouragement that in a high number of cases, there is an acute phase. Yes I got weaker as I had muscle wasting in the quads, gluteus maximus and siliac muscles. The exasperation for me was that PT, while did no harm, did not improve strength. My strength is returning slowly. More in tune with nerve regen than PT. Try not to worry about things that have not happened yet. Hopefully you are in an acute-phase that will accelerate the timetable. Make sure your b-12 is over 400, excersize to tolerance, get sleep, if you search for Mitochondrial health and do what you know to do, tests will give you a better idea what you are dealing with. I stayed in a panic for many months so I know how answers are important. Patience is always the shortest when the need is the greatest. Good Luck, Ken in Texas.
Thank you Ken. I just wrote a bunch of questions...do you mind if I send you a PM instead? My B12 is in the mid 300s, and I will be asking my doctor for vitamin B infusions.
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Old 04-17-2015, 02:19 PM #13
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What are thoracic outlet syndrome symptoms and signs?


Symptoms include neck, shoulder, and arm pain, numbness in the fingers, or impaired circulation and flushed sensations to the extremities (causing discoloration). The involved upper extremity can feel weak. Often symptoms are reproduced or worsened when the arm is positioned above the shoulder or extended. Patients can have a wide spectrum of symptoms from mild and intermittent to severe and constant. Pains can extend to the fingers and hands, causing weakness.
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Old 04-17-2015, 02:48 PM #14
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Thank you - I will look into the other threads about treatments.

Were you ever diagnosed with clinical weakness from a doctor? I have, with my shoulder.

My EMG was abnormal in my arm. Showed the things that I posted above. The doctor ruled out ALS only because of the sensory and pain issues, my age and the location of weakness (shoulder), but I am so uneasy about this. What were the reason ALS was ruled out for you? Did you have abnormal EMGs?
For me, ALS was ruled out due to clean EMG, lack of significant clinical weakness, and lack of progression over a period of several months. MS was ruled out due to clean brain and neck MRI's and normal results on somatosensory evoked potentials testing. It was certainly a relief to find out that I did not have have these very serious diseases.

Now, if only I could get a definitive diagnosis of what is wrong with me.......
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Old 04-18-2015, 10:43 AM #15
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What are thoracic outlet syndrome symptoms and signs?


Symptoms include neck, shoulder, and arm pain, numbness in the fingers, or impaired circulation and flushed sensations to the extremities (causing discoloration). The involved upper extremity can feel weak. Often symptoms are reproduced or worsened when the arm is positioned above the shoulder or extended. Patients can have a wide spectrum of symptoms from mild and intermittent to severe and constant. Pains can extend to the fingers and hands, causing weakness.

Ok, hmm, this is possible. I will ask the neuro surgeon on Monday on if he thinks this is possible! I wonder if it can lead to neuropathy/neuritis...
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Old 04-18-2015, 10:49 AM #16
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For me, ALS was ruled out due to clean EMG, lack of significant clinical weakness, and lack of progression over a period of several months. MS was ruled out due to clean brain and neck MRI's and normal results on somatosensory evoked potentials testing. It was certainly a relief to find out that I did not have have these very serious diseases.

Now, if only I could get a definitive diagnosis of what is wrong with me.......

I am happy for you, it is a blessing if this could be ruled out....but I have an abnormal EMG with clinical weakness and am scared. Did they tell you that pain rules out ALS/MND (did/do you have pain)? That is what my neuro said to rule it out for me and that is the only string of hope I have right now...my weakness has not improved (yet) since healing takes a long time....so I am in a phase of waiting, will it improve or progress?

I also had a clean SEP and MEP.
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Old 04-18-2015, 12:30 PM #17
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Do you have any discoloration in the arm or fingers?

My understanding of some TOS is that it can result from a blood clot in a vein in the shoulder area. When that happens, nerves may be impacted with poor circulation, etc.

So some evaluations involve evaluating the blood vessels in the area. You might think about this aspect too, since you don't lift weights (move furniture or luggage), have an injury, swim too much, or throw balls etc.(sports)

Females on birth control pills can have odd blood clots in strange places, especially if they have a genetic error in the family to favor these. Some get the clots in legs, others, in deep pelvic veins, and some get them in the brain and elsewhere.
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Old 04-18-2015, 04:11 PM #18
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Did they tell you that pain rules out ALS/MND (did/do you have pain)? .
Note that I'm obviously not a doctor, so this is just what I learned from various sites: At that time, I had no pain, so it wasn't a factor for me. However, everything I researched at that time said that MND generally does not cause significant pain (or numbness, paresthesias, etc). So, while not definitive from a diagnostic standpoint - the presence of pain or other sensory symptoms tends to point away from MND. (That seems to match up with what your doctor told you.)
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Old 04-18-2015, 05:37 PM #19
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Do you have any discoloration in the arm or fingers?

My understanding of some TOS is that it can result from a blood clot in a vein in the shoulder area. When that happens, nerves may be impacted with poor circulation, etc.

So some evaluations involve evaluating the blood vessels in the area. You might think about this aspect too, since you don't lift weights (move furniture or luggage), have an injury, swim too much, or throw balls etc.(sports)

Females on birth control pills can have odd blood clots in strange places, especially if they have a genetic error in the family to favor these. Some get the clots in legs, others, in deep pelvic veins, and some get them in the brain and elsewhere.
Thank you. No discoloration or vessel issues here. I also do not take any birth control. All I know is when my neck pain started up again tonight, so did the pain in my arm. And tingling/prickling in elbow. Its hard to NOT think that my arm us not part of my neck herniations. I will see what the neuro surgeon says on Monday. I will for sure report back.
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Old 04-18-2015, 05:40 PM #20
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Note that I'm obviously not a doctor, so this is just what I learned from various sites: At that time, I had no pain, so it wasn't a factor for me. However, everything I researched at that time said that MND generally does not cause significant pain (or numbness, paresthesias, etc). So, while not definitive from a diagnostic standpoint - the presence of pain or other sensory symptoms tends to point away from MND. (That seems to match up with what your doctor told you.)
Thank you. I have heard that too all over the place. I def have pain that only gabapentin can help. Oral Cortisone didn't take it all away, all other meds (Ibuprofen, etcetera) were useless. I posed above, when my neck hurts, there goes my arm pain again. Will see what the neuro surgeon says on Monday. I appreciate everyone's attention and support! I would invite you all over for dinner if I could!
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