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paul71

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I went to an orthopedic surgeon about my shoulder today. She was shocked at the weakness in my shoulder during the clinical exam. She asked whether I had had a muscle biopsy to check for myositis or if I had been tested for metabolic disorders. (No to each question, I tried and failed to this point.)

She then shocked me. The doctor told me that I had "clinical weakness" and referred me to yet another neurologist, hopefully for a muscle biopsy. She also said I had a "winged scapula".

I was surprised to be diagnosed with clinical weakness by an orthopedic surgeon. I'm more confused than ever. Very good doctor this time. Very attentive, and she asked a ton of questions.

But I'm confused. Two neuros say no clinical weakness. Anyone get diagnosed with clinical weakness by a doc other than a neurologist? Also, I am very weak in some ways but then I went home and did 6 pull-ups. ?

Paul
 

Nighthawk

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Paul,

How is the Neurologist performing your strength tests to determine whether or not there is clinical weakness? Did the way the Orthopedic Surgeon perform this test on you differed somehow from they way the Neuro did? What did you observe while the tests were done at both locations?

Keep in mind that some Neurologists may not pick up clinical weakness if all they are doing is manual muscle testing until you get to the point that you are really quite weak and cannot resist them- or hold your joint against gravity. That's an important thing to know.


Hope this helps.


NH
 

paul71

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First, the surgeon had me reach my hand behind my back and attempt to push against her hand. I couldn't produce any force. This didn't worry me so much because it was just such an awkward position.

The other tests were the same as the neuros did. Bent elbows, hands in front of me at a 90 degree angle and attempt to either push out vs her hands or hold them steady when she pushed vs me. She completely overpowered me immediately. I was shocked and she said "wow". My arms quivered for a second before giving way. I don't know if I should contact my neurologist and tell him what she said. As the orthopedic surgeon volunteered, "In my position as 'just a dumb orthopedic surgeon...", and she went on to say that neurologists think that orthopedic surgeons are 'mechanics'.

So anyway, I am more confused than ever.
 

Nighthawk

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Well,

Don't know what to tell you but, I think you should share the Orthopedic Surgeon findings with your Neuro. They might overlooked something the Ortho did or, the Ortho might have done something that was wrong. I'm just saying.
I am not saying that was necessarily the case, no. But it would give some clues of how the tests were done and if they were done the right way or not and they can compare data.

Just a humble opinion. Remember, I'm just a PALS suffering from this disease, not an expert on Neuromuscular problems.


Take care.


NH
 
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Alyoop

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Knowing both Orthopaedic surgeons and neurologists, I would trust the opinion of a neurologist looking at muscle strength anytime. I was diagnosed with neurological issues by both s cardiologist and an ENT, which were both proven wrong, They just did not have such careful techniques and they did fewer so were less accurate in what they found.
 

vickim

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My neuro uses a little machine thing to measure my strength in my arms, legs and a different one for my hands. Then he uses a tuning fork to check my neuropathy. I don't know if any one else has had that.
 

paul71

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My frustration: the endocrinologist said I should get a muscle biopsy. The orthopedic surgeon wouldn't even suggest PT for my shoulder because she didn't want to cause further damage - in her opinion, I showed signs of a muscle myopathy or neuromuscular disease or metabolic disorder. She referred me to her hospital's muscle biopsy neurologist, who specializes in these disorders. So I called the neurologist's office to make an appointment. Turns out because I was referred to a different neuro in the same hospital in December, even though he has no plans to see me again, I am considered an established patient with him and he basically has veto power over me seeing another neuro there. He gave me a totally cursory exam and sais take Ibuprofen.

I guess I need to start all over with a new hospital. All the specialists say "get a muscle biopsy" but I might be blocked by a guy who saw me for 10 minutes 4 1/2 months ago...

Elevated CK, clinical weakness, hand tremor, muscle wasting, and no treatment... I'm thinking I might be one of these 5 year cases to diagnose. Any advice? Even their orthopedist whispered "you need to go to Mayo Clinic" but I have to hang on until 2014, when I can switch to insurance that will cover it.

Frustrated but not ranting. : )
 
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fitzroy

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Probably the best thing to do is to work with whomever is your primary specialist or GP to gather up reports from each of the other specialists you've seen, including a written report from the orthopaedic surgeon. Written findings are certainly better evidence for subsequent appointments or evaluations.

For what it's worth, I can definitely appreciate your frustration.
 

Matt21

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I would tend to agree with fitzroy. It gets quickly confusing going from doctor to doctor and it's a good idea to keep track of their findings by collecting the written notes. As far as who is the best person to recognize clinical weakness, I would say the doctor that has done it most of the times. I think the neuro might be a better bet since this is part of his standard neurological exam process. I would assume that he performs dozens of these strength tests each day.
 

paul71

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I am filing a request for my entire medical record.

Thursday, I received a voicemail at 800am from the orthopedic surgeon. She had personally spoken to the muscle specialist, who then agreed to see me. I got this message when I got home from work at 300. I immediately called to make an appointment.

When I called, the receptionist said that a note had been put into my file at 246. After talking to the first neurologist, she changed her mind and is not going to see me. They want to refer me to Northwestern or Mayo. But these hospitals are not covered by my insurance.

I've got multiple conflicting EMGs, elevated CK, hyperreflexia, clonus, a hand tremor and atropied shoulders (and scapular winging). Clearly, something is wrong. Their own orthopedic surgeon won't do PT because she sees these issues. I have a referral from a doctor in the same hospital but the first neuro doesn't like "2nd opinions within the same clinic".

I am filing a complaint with Patient Relations. I feel like I am being denied medical care. I have good health insurance but I am not being allowed to use it. Even my GP stated to me on the phone that I am the victim of "office politics".

Anyone have any advice? Do I have any other recourse?
 

vickim

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Go and talk to the patient rep. See what they have to say about it. It would be awful if you had to sue or something like that. I have my fingers crossed for you. Hopefully the patient rep will get it all straightened out. You have rights and ask the patient for a copy of those rights. Good luck. Keep us posted.
 

olly

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Sorry to hear about your frustrations paul.....i agree about filing a complaint.
Its your right to be seen by whichever doctor you choose and get a second opinion from others.
You should be able to severe ties with this neuro and be referred to another....this neuro does not own you....clearly he's one of those with a "god" complex.
 

Nighthawk

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Definitely, if I was you, I'd be filing a complaint.
 

paul71

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This is becoming a sick joke.

The neurology department called me today. Apparently, I "won" my complaint, but... I'm not being sen by the neurologist that I was referred to. I'm being seen by the one who has been blocking the referral! And it's Thursday (lightning fast). My options were 745am or 800am. So, basically they're giving me the 15 minute "make it look good" appointment, probably at the suggestion of their legal department. I said that I wanted to see the neurologist that I was referred to, not the one that I filed a complaint agianst, but that wasn't an option.

I called patient relations and left a voice mail. Sure seems like a conflict of interest to me. I can see it now. Touch your nose, walk on your toes and heels, you're good. So I am being seen by the only doctor in that hospital who has ever thought I did not have a neuromuscular problem. This sure seems like a sham to me.
 

vickim

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