Hard to believe

[Noel707]

39 year old female with symptoms beginning early January. I had initial issues following cosmetic Botox injections with vision and vertigo for ab two weeks. I experienced what felt like a warm burst in the back of my head and from then on a deep muscle numbness and then some tingling and burning sensations started in my right leg, then left leg then upper extremities within a month. I also began to have shortness of breath and difficulty swallowing. I haven’t choked, it just feels different and weaker with thin liquids.

I have had all the blood tests, two MRIs, and EMG. I have twitching, muscle atrophy and weakness all over my body, especially my hands, legs and feet which make standing almost unbearable. Even facial muscles in the jaw have atrophied.

The neurology resident and attending stated normal clinical exam because I was able to resist minimal pushing/pulling during a manual muscle test and have full range of motion however I have been unable to work as a physical therapist since all this began bc of the weakness, poor coordination and fatigue. I have a referral for a neuromuscular specialist next month and a pulmonary function test coming up.

I understand that EMGs are used to rule out MND however I’m not so sure I trust the validity of one completed by a neuromuscular fellow and the attending with experience not in the room. How can one have so much atrophy, twitching and weakness with a “normal” EMG? He tested two areas in right leg and two areas in right arm.

 

[ShiftKicker]

Hi there-

We ask that people read here first, as it answers many of the questions that bring people here. It explains why sensory issues (numbness, tingling, burning, feeling of warmth) and non-motor issues (vertigo, dizziness) and a normal EMG all point away from ALS and towards something else. An EMG in a symptomatic area would definitely detect issues if it were to be ALS.

It sounds like you're having quite the time of it and I hope you find your answers, but ALS does not look to be in the picture, given the number of non ALS symptoms you report.

Take care

 

[Noel707]

Thanks for your reply. I thought that too but since working in neuro PT for the past 12 years, I have seen/treated those who report otherwise, although not common, that some do have sensory involvement. The EMG was in affected areas. I guess I would be reassured had it been performed by the neuromuscular specialist who knows specifically what to look for. There seems to be a pattern with the sensory symptoms followed by twitching, weakness and atrophy. Hoping I get answers next month.

 

[lgelb]

If you could post the de-identified EMG report/table, that might better inform our responses, but the short answer to your last question is that atrophy, twitching and perceived weakness can relate to a lot of conditions besides MND, including post-Botox injection sequelae, which can include frank botulism (including headache, vision disturbances, swallowing difficulty, etc.) or hypersensitivity, neither of which would be expected to show up on EMG.

There can be sensory involvement in ALS, certainly, but it has not been a dominant feature at onset in the sequence you describe. You also describe whole-body atrophy that evidently was not appreciated in your exam?

Did you share your Botox history with the neurology team and rule it out as an etiology of your current issues? I would want to make absolutely sure that happened, since you are describing disabling symptoms, and the consequences of delayed treatment can be deadly.

Like ShiftKicker, I see no reason to worry about ALS. A neuromuscular resident trained in EMG should be qualified to administer the test, though as always I would check to see that the report was reviewed by the attending.

 

[Noel707]

Thanks for your time and input. I have absolutely mentioned Botox to every single provider I have seen. I have no doubt, being a neurotoxin, it’s definitely the cause of these cascading symptoms or triggered something horrible in my body. Of course I was written off and quickly dismissed because Botox is a very lucrative business and no PCP, neurologists, NP seems to think Iatrogenic botulism exists. Also the ER NP I saw, ruled it out as a differential because of the descending to ascending manner of the limb symptoms.

Atrophy has not been confirmed by a medical professional. Before all this, I never had established doctors of any kind. I’ve always been healthy and fit. Therefore the doctors I have been seeing do not have any idea what my body looked like before in order to compare the atrophied areas I am referring to. However, it was noted that there was atrophy in the left FDI. I also experienced an 8lb weight loss within a month.

I’m attaching my EMG report. During the EMG, the neuromuscular attending was not in the room. There is an addendum on my report stating she was present during important parts of the exam and agrees with the reported findings.

 

[Nikki J]

Pictures are not allowed. If the neurologist saw atrophy we believe them.

It is wrong of course to document something that did not happen. However a fellow, as you must know has gone through a residency. Usually in neuro residencies they do emgs and I would think someone heading to neurophysiology fellowship did as many as they could. There are community attendings doing emgs right out of residency. So it was far from their first experience. I don’t know where this person was in their fellowship but the attending must trust them. Honestly I don’t think abnormalities are easy to miss as a non neurologist patient I have had multiple ones for research and it was pretty obvious to me early on what didn’t look / sound right. That said, you can raise this with your neurologist

 

[Noel707]

The DO is a first year fellow. I’m not saying he doesn’t have experience, but as I see on several other posts, it’s highly recommended to be assessed by someone specifically trained in neuromuscular disorders as EMGs are sensitive and operator dependent. Thankfully I will be soon. It’s terrifying experiencing all the symptoms and not recognizing your life as it is now. Especially when one has young children.

 

[Noel707]

Besides Dr. Bedlack, is anyone familiar with any other providers in Duke’s neuromuscular group?

 

[Nikki J]

Dr Li is the other doctor in the ALS clinic. The only comment I heard about her was positive

 

[Noel707]

Yes she is one among 11 others comprising Duke’s neuromuscular diseases team. Wondering about the other neurologists as I’ll be seeing one of them. I’ve not be referred to the actual ALS clinic yet.

 

[Noel707]

Just updating on PFT results which were normal according to pulmonologist. I don’t understand why I feel short of breath with normal PFT and good O2 sats. From my understanding and please correct me if I’m wrong, FVC, FEV1 and MIP are a few important values when looking for ALS respiratory involvement. MIP wasn’t assessed and all testing performed in upright sitting, nothing in supine position.

 

[lgelb]

Regardless of what was measured besides FVC, it would be hard to imagine a normal FVC value with respiratory involvement in ALS. MIP and other measures are used to place an abnormal FVC value in greater context, not to override a normal one.

So you can check that off your worries.