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Neurologist Visit – “You Look Great!” Pt. 2
In my previous topic I detailed the ongoing battle with my diagnosing neurologist because she says, “You look great!” Yes, we butt heads. Yes, I stand my ground. She’s not there when I’m at my worst.
This second part, I want to touch on my ongoing left shoulder weakness. Over a year ago I appraised her of this weakness developing. She denied it was LEMS and suggested it might be a rotator cuff injury. It felt like LEMS to me. It acted like LEMS to me. And I’m the person who has LEMS, for heavens sake!
Now over a year later, I’ve had imaging. The X-rays show old bicycling injuries, a broken collarbone, a Grade 3 separation, and an old rotator cuff injury. These are OLD injuries from the early 90’s! The current reading is, Normal. What’s a guy to do? Once again she is denying this is LEMS because it’s “unilateral” (one sided). Let me repeat, I’m the LEMS patient. It feels and acts like LEMS. Could she be right? It’s possible. I won’t discount her opinion, but it’s just that, an opinion. She wants me to see PM&R (physical medicine and rehab), and wants an MRI. I will discuss this at my next appointment with my physical therapist (in OM&R) in a couple of days.
Have you ever had LEMS weakness develop only on one side? Your experience could help me! -
4 Replies
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I have gone through everything you just said. It is frustrating. Because you look good for your 15min it doesnt tell it 2 days to prepare for it. It seems that professionals i have gone to seem only what to address basic health issues. If the issue is deeper and more complicated i have to do my own research. He will do what i read but to give me any support or understanding he doesnt have time for.
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@marym Mary, this speaks to a recent topic, preparing for your neurologist visit, which I apply to ALL my clinic visits. I prepare notes with everything I want to discuss, to maximize my time. It doesn’t eliminate the frustration when they don’t “get it”, but at least I know I’ve covered everything I want to. Those little 6 months visits are crucial!
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I get same response from the doctors too. I usually tell them that I prepare for these visit with bed rest beforehand and by not having any other appts or even going out a few days before the visits and then I’m wasted after the appt. and usually 1-2 days after it too.
For me, my lems weakness is NOT bilateral.
My worse areas that I require splinting from the severe weakness is my left arm and right calf.
I’m just starting to have some occasional weakness now in my left calf But for years it was only unilateral on those 2 areas.
I truly hate it when providers try to box diagnoses into one standard box. While for many, that box is the same, but for the rare few, it’s absolutely not. Providers need to really hear out the patients and listen to us. It’s our bodies and we know it better than anyone can imagine!when I started to lose my voice from lems they all thought it was from Reflux. Seriously people! I’ve had GERD my whole life and know very well the symptoms of reflux. That wasn’t it. It wasn’t until I saw an actual neuro-ent that they found atrophied vocal cords FROM LEMS, not GERD.
if it bothers you enough, don’t just take one persons response. Keep searching for answers is my advice.
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@rdt you are on it! You understand! With such little actual clinical experience with LEMS patients for most neurologists, you’d think they’d try to take in and assimilate the information patients are providing them. Thanks for your unilateral report too. My neurologist literally said it could not be LEMS if it wasn’t bilateral. How may responses have I gotten from this topic that don’t substantiate her pronouncement.
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